posted by Amy on Oct 9

In an online support group a member posted about “I Am Dying.” a National Geographic special about Renee Heidtman, a 32-year old woman who died of breast cancer.

If I remember right, after she died Renee’s friends and family took solace in the thought that she “did it her way.” What she did was refuse treatment for early-stage breast cancer. She had a binder full of “research.” She decided to do “Gerson Therapy.” The cancer metastasized to her liver, lymph nodes and brain. She agreed to try chemo and radiation then. She died soon after.

The reason she opted for juicing and coffee enemas was she was worried her future fertility might be jeopardized by “toxic” conventional cancer treatment. And it might have been.

On the other hand, Gerson can kill you. It can cause lethal electrolyte imbalances.

With anything, whether or not it’s harmful depends on the dose. You can even overdose on water.

Cancer is “natural,” right? I don’t understand being more afraid of chemo than of cancer.

Cancer is not caused by “toxins” or cured by flushing out “toxins.” It’s caused by mutations.

What did she have in her research binder? Remember, the plural of anecdote is not “evidence.”

There’s no such thing as “alternative medicine.” If something is effective, it’s medicine. If not, it isn’t. Full stop.

Some people who are diagnosed and treated for early stage breast cancer later progress to Stage IV, which is incurable. (I was Stage IV “de novo,” or from the first.) Renee’s cancer might have metastasized anyway, even with treatment. But we’ll never know.

posted by Amy on Oct 4

In mid-July I learned the cancer had spread to my brain, Symptoms included double vision and balance/gait problems.  I had 5 radiation treatments, ending in early August. I  am quite disabled now—housebound and wheelchair bound. I am very fatigued. I have not slept this much since infancy.

This might be the beginning of the end. I hope not. I might have some good quality time left. But I think “hope for the best; expect the worst” is a good approach here.

I am naturally upbeat and optimistic, and I’m good at compartmentalizing my worries, I have never forgotten I’m living with a terminal, incurable illness. Just because I’ve beaten the odds so far does not tell me how much more time I have. Cancer can turn on a dime.

Be good to one another. Take nothing for granted, Be grateful, And stay in the light.

posted by Amy on Jun 26

Cancer support groups all have guidelines about civility, and not fighting, and not attempting to make money from membership in the group. But they don’t prohibit people from advancing bogus theories about health or cancer, nor do they require that “information” come from peer-reviewed scientific sources.

The other day there was a thread on one of my groups about an assertion made by an internet “health guru” that folic acid supplementation is ineffective to cure or prevent vitamin B9 deficiency, and the “real” vitamin is folate. The person who posted it lamented that “we” aren’t told about this (apparently there’s supposed to be some connection with cancer) and someone else chimed in that “they” don’t research it. I spent about five minutes on Google Scholar and learned there’s actually quite a bit of research on folate and folic acid, and on the effects of fortifying grain products with folic acid, which began in the US in 1996. The intent was to prevent neural tube defects (such as spina bifida) in newborns. It also helps maintain cognitive health in older people. I posted a comment about that brief foray into actual facts about science and folic acid supplementation, and someone replied that the reason the number of neural tube defects had gone down in the US is women aren’t getting pregnant (presumably because folic acid causes infertility?). She cited no source for that claim.

The “guru” spouting this nonsense is an acupuncturist with no science credentials. He’s also a proponent of a “paleo” diet and claims to have disproved studies that link meat consumption with maladies such as heart disease and cancer. He is opposed to vegan diets and warns people not to choose veganism.

I agree that people “should” get vital nutrients from diet and I’ve always tried to eat pretty low on the food chain. It can be difficult to get all necessary nutrients–especially minerals–on a vegan diet. But it’s not impossible to do so as long as one takes a vitamin B12 supplement or uses foods that are fortified with it, because B12 does not naturally occur in any non-animal foods, and B12 deficiency can be  “masked” by getting plenty of other B vitamins. For more on that I highly recommend the extensive nutrition information in the back of the classic vegetarian cookbook, Laurel’s Kitchen. In certain high-stakes situations, such as for women of childbearing age, and cancer patients, some supplements play a vital role. If we can prevent permanent disabilities by tossing some B vitamins in flour and corn masa, then we definitely should.

So these women on the forum had accepted a false premise from a quack, and they were going on and on about the supposed ill effects of folic acid. One even railed against the March of Dimes pushing for folic acid supplementation of cornmeal. I honestly don’t understand it. Except for the one comment I made, I have abstained from participating in the discussion. Never try to teach a pig to sing. You waste your time, and it annoys the pig.

People take the time to find out what quacks and snake oil salesmen have to say, and then change their behavior accordingly (and try to persuade others), but they apparently can’t be bothered to learn how to spot quackery and question specious claims. They don’t seem to know how science actually works, and they form an echo chamber for lies. A prominent example of this is “the truth about cancer,” which is a “documentary” that I did not have the patience to sit through once I saw all the red flags. That keeps coming up all the time in my online groups, and if I push back on any of it I risk getting thrown out.

If I had a cancer support group, I would allow members to challenge any claims not backed by scientific evidence, and I’d remind them that the plural of anecdote is not evidence. If they don’t even bother to look for research papers that support their assertions, they shouldn’t be making the claims, but if they do then what they say ought to be fair game for debunking. As long as disagreement doesn’t become abusive or personal, people should be encouraged to point out logical fallacies or offer evidence that contradicts unsubstantiated claims.

As I have said before, I think it’s immoral to prey on sick people. And it’s unethical to hold oneself out as an “expert” when one is nothing of the sort. You can get an online certification as an “integrative medicine specialist” or “naturopath” without learning a damn thing. I don’t know why Americans are so susceptible to quackery. I wish there were some way to stop it.

posted by Amy on May 15

I may have to drop out of one of my online support groups. I’m in favor of the kind of companionship, camaraderie, information, and encouragement that can be shared in a support group. A burden shared is that much lighter. I am willing to listen and to offer, as they say in 12-Step groups, “experience, strength, and hope.” I also understand that people facing a terminal cancer diagnosis are grieving, and they need to process that grief. I want to be compassionate and supportive. I want to be loving and nonjudgmental. And of course it’s sad when someone dies. It’s perfectly natural to rage against cruel fate, and to lament.

I hate to say this, though, but I’m getting fed up with it. I recently attended a conference about metastatic breast cancer. It was a good conference, and I’m glad I went. But at one point they were talking about anger (about our diagnosis and reduced life expectancy), and I wrote in my notes, “Is there something wrong with me?” I am not angry that I have cancer. I don’t feel cheated. I don’t resent it. Shit happens. I am not some special snowflake who deserves to get through life unscathed. I don’t know of any such person.

Nobody gets out alive, and no one is guaranteed a certain number of years of life. Furthermore, as citizens of the US, we live in a bubble of privilege and safety. The US certainly has its issues, especially when it comes to healthcare. But we have health insurance. We have disability income because of our diagnosis. We expect safe consumer products, safe roads, safe streets, safe water, clean air, and I’m pretty sure everyone at that conference has all those things. I got a grant from that conference–the trip was essentially free. I’ve been living with this disease for six years, and I’m still doing well. I am better off than over 99% of the people in the world. I am incredibly lucky and blessed.

Yes, it sucks that 40,000 people die from breast cancer every year in the US. That’s not a good thing at all. And I don’t want to get into comparative suffering arguments about this, but it seems incredibly selfish and tone deaf to focus on that to the exclusion of every other kind of misfortune, untimely death, and suffering in the world. I think of all the children who die of infectious diseases, or starvation, or dysentery from lack of clean drinking water or proper sanitation. I think of their grieving parents. I think of child brides who give birth too young and suffer fistulas and all the shame and anguish that goes with that. I think of children sold as sex slaves or forced to be child soldiers. I think of cancer patients in other parts of the world who don’t even have medication for pain as they lay dying. I think of the devastation of HIV/AIDS, of war, of famine, and “natural disasters,” many of them caused or made worse by the lifestyles of people who live in countries like ours.

When I try to decide where to put my time and energy, I think about how I can do the most good with my limited resources. Solving cancer is certainly a worthy goal, but as another speaker at the conference emphasized, the problem is far too large for individual or small-group efforts. The money to tackle that has to come from all of us acting jointly. We need to fund the NIH and the NCI generously, and make sure researchers have the resources they need to do basic science. We need to quit thinking “government is the problem” and go back to seeing government as a way (in some cases the only way) to “promote the general welfare.”

In the US we keep being told we can’t have nice things, while 50% of the discretionary federal budget goes to warmaking. We spend $1 trillion per year on “defense.” The US is the largest purveyor of weapons of mass destruction in the world. I find it hard to feel much outrage over domestic cancer deaths, frankly, when I see how many people have been killed, harmed, or driven from their homes by my government’s endless wars of choice.

I don’t think my life matters more than anyone else’s. If there were some way to divert the funds that go into keeping me alive (and it’s a huge number) to providing food, clothing, shelter, health care, education, and peace for other people, as God is my witness I would do it in a heartbeat. But I can’t do that, so I have to figure out some other way to justify my privilege, and to use the gifts I have to make the world a better place.

“I am cognizant of the interrelatedness of all communities and states. . . . Injustice anywhere is a threat to justice everywhere. We are caught in an inescapable network of mutuality, tied in a single garment of destiny. Whatever affects one directly, affects all indirectly.” Martin Luther King, Jr. Letter from a Birmingham Jail.

Do keep loving the people in your immediate circle. Do mourn the loss of those you love, especially those who die before their time. Do weep for the ones they leave behind. But for God’s sake look beyond that immediate circle. Stage IV cancer is incurable right now. But there’s a whole lot of suffering, misery, and death that is being caused by policies and decisions that were by no means inevitable. War is a choice. Poverty is a choice. Depriving millions of people of health care and the other necessities of life in “the richest country in the world” is a choice. Other choices were possible. And they still are. Raise your eyes. Raise your voice. Do something.




posted by Amy on May 13

Two years ago I posted this on Facebook:

I don’t have any pictures of just me and my mom, partly because I was her second child, and partly because she was the family photographer.

My mother was beautiful, intelligent, creative, funny, talented, and driven. Unfortunately, she was born a generation or more too early to get effective help for her troubled and volatile mind, nor did people talk much in those days about gentler, more loving and peaceful ways to raise children. She often wrestled with overwhelming rage, and took it out on her kids, especially me and my older brother. The realization that alcoholism is a disorder that affects the whole family and needs to be addressed as a system of interlocking behaviors also came too late to help her–and us–and especially my dad. In those days, people kept addiction and mental illness secret, and dealt with it as best they could in isolation.

On the other hand, my mother also went to extraordinary lengths to help us kids with our activities and projects–Den Mother, Room Mother, typist, facilitator, creator of unique and fantastic Halloween costumes. She loved celebrations and road trips. I get my love of museums and festivals from her. She had all kinds of practical knowledge, much of which she passed on to me, along with a can-do attitude. She told me I could be whatever I wanted to be when I grew up, and encouraged me to get an education. Everyone loved her spontaneity and sense of adventure, and I inherited some measure of that same gutsy, proto-feminist spirit.

As I look back I realize that there have always been wise, strong, loving women in my life who reinforced the places in my psyche that needed shoring up and who showed me there were alternatives to the way things were at home. Parents aren’t the source of our Love, just one expression of it. I have been blessed with grandmothers, aunts, teachers, Girl Scout leaders, and friends of all ages who have provided the positive regard, wisdom, and loving kindness that I needed.

Even small, infrequent doses of sanity and encouragement can make a huge difference in how a child’s life unfolds. To repeat what a wise Facebook friend put in her post just now, “Happy Mother’s Day to all women who love, protect, teach, or care for children big or small.” Blessings and love to all mothers, with all their faults and frailties, and to all the “other-mothers.”

All of that was true, and it still is, but it isn’t the whole truth. I made it sound easy, maybe even automatic. I downplayed the negatives in that Facebook post because I wanted to offer encouragement and hope to others, and consolation to people who had complicated (or bad) relationships with their own mothers.

The rest of the story is that my childhood environment was highly detrimental to my mental and physical health. I experienced what is now being called “complex developmental trauma.” Its effects can be muted, but not completely overcome. My mother was quite narcissistic, and she was abusive. All the “good mom” stuff she did was for public consumption. It was helpful, and it was a good model for me when I became a mother. It was especially good to have the guts to tackle some big project at the last minute and pull it off. That’s a valuable life skill for almost everyone. But behind closed doors she was a monster. You don’t need to know the details.

All her life my sister put our mother’s face on me. She feared and loathed me. She also loved me, or wanted to love me. The burden of being a screen for her projections of the mean mom inside her head could be unbearably heavy to bear. I learned not to take it personally, and to calibrate my expectations of her to (mostly) avoid being hurt. But I may never get over my sadness that we couldn’t enjoy being together and were never friends.

There’s a very good chance the trauma I experienced caused epigenetic changes that I unwittingly passed on to my children in their DNA. Past traumas haunt our family like ghosts. It also influenced my choices of marriage partners, and my ability to parent. I honestly believe I have healed to a great extent, and I think my children had a happier childhood than I did and are healthier than I was. But the scars will never go away. We can work around them, but they’ll always be there.

Nevertheless, I stand behind the motivation for the Facebook post. People can change. People can learn better ways of being with one another. One major reason I am as functional as I am is the “other mothers” I talked about in the Facebook post. You can be an “enlightened witness” for an abused child. You can be a beacon of sanity, love, joy, and beauty, whether the child is related to you or not, and whether you get much of a chance to be with the child or not. Just let your light–the light of  God/dess, who is Love, shine forth. Be a model of good self-care. Be a  model of faith, hope, compassion, and love every chance you get.

Happy Mothers’ Day.

posted by Amy on Apr 8

I have metastatic breast cancer. When I was first diagnosed in 2011 I had metastases in my liver, and possibly in my lungs. The liver mets were confirmed first. My first course of treatment “resolved” them, and they have stayed gone. (Knock on wood.)

Not long after that, I developed one bone met–in one vertebra in my lower back. I’ve had it for five years. Bone mets can cause a great deal of pain and disability (though not, so far, in my case) but they don’t kill.

For me the big issue is my lungs. A biopsy four years ago confirmed that I have lung mets. One lesion in my right lung was causing recurrent pneumonia in 2016. My medical oncologist referred me to radiation oncology. I got radiation treatment to that lesion, which appears to have been successful in the sense of resolving that structural problem. I haven’t gotten pneumonia again. But I got radiation pneumonitis, a common side effect of radiation treatment to the lung. I had to take steroids for that, and I was having trouble breathing with the slightest bit of exertion. Little by little that has gotten better, and now, over six months after my last radiation treatment, I’m off steroids and slowly regaining aerobic capacity.

But I want to talk about coughing. In the last year and a half I’ve been coughing a great deal, but I’ve had different kinds of coughs. There have been times there was more than one kind of cough going on at the same time. Cancer in your lungs can cause coughing. Apparently, lung impairment can cause acid reflux somehow, and that can include a dry cough. Then there’s coughing that can be caused by pneumonia (check), sinus infection (check), bronchitis (check), radiation pneumonitis (check), and postnasal drip from allergies or viral infections (check). This evening I was coughing a lot. Then I took an antihistamine and a proton pump inhibitor (for acid reflux) and I stopped coughing.

In today’s highly-specialized health care environment, it ends up being the patient’s job to sort out what’s going on. Last fall at every cancer treatment visit when asked if I had any pain I would say my face hurt. I had wandering pains all over the right side of my face (jaw, teeth, ear, etc.) My oncologist said she didn’t think that was cancer and said to go to the dentist, who didn’t find any dental problem that could be causing the pain. Months later, it occurred to me to go to my primary care provider, who diagnosed it as a sinus infection and gave me two DIY things to do, plus an antibiotic prescription. One result of that, besides fixing the pain in my face, was to reduce the amount I was coughing.

On my last PET/CT scan the report said my right mandible (lower jaw) was lighting up, and flagged that as cancer progression even though they didn’t see a lesion. One molar had been hurting, and I knew it had a hole in it. So I went to the dentist and found out the tooth had broken in half and was infected. My dentist pulled the bum tooth and put me on an antibiotic, and now the pain and inflammation are gone. Too bad I lost a tooth, but that beats cancer progression any day.

And so it goes. Yes, I know I have cancer in my lungs. I accept that reality. But you can have more than one thing wrong with you at a time, and sometimes the symptoms overlap. I realize I have a deadly illness that will most likely be the death of me eventually. But it would be a damn shame to succumb to some garden-variety bacterial infection instead.

posted by Amy on Feb 27

No, I didn’t mean to say “work/life balance.” Sigmund Freud said the most meaningful things for a human being are to love and to work. I agree with that, though I don’t see a sharp dividing line. I love all the work I do, some of it for pay, most of it because it is something to which I feel called in some sense–because it makes me or someone else happy, because it’s beautiful, or because I created it. (And even my paid work is a vocation that constantly presents me ways to learn and grow.)

But I have advanced cancer, so I’m always confronting death too. When he was dying of cancer Christopher Hitchens said he was experiencing what everyone goes through as they age, just at a faster pace. After living with metastatic breast cancer for almost six years, I have to admit that’s true for me too.

I am immune compromised, because cancer, cancer treatment, and steroids all suppress the immune system. That has had very real consequences, ranging from little infections that get cleared up with the right antibiotics to spending 26 hours in the hospital last June with a raging case of pneumonia (after which the pneumonia kept hanging on, or recurring, for several more months until radiation treatment corrected the structural reason for the pneumonia. The cancer was blocking the airway below it, interfering with the normal mechanisms for de-gunking the lung.)

In light of all that–cancer becoming more insistent in the last 18 months or so that it is out to get me and will most likely succeed–and with Ash Wednesday approaching, I have decided I need a better death/life balance. I suspect that being a little more respectful of the threat I’m facing might actually help me live longer, or at least better.

For nearly six years I’ve been fairly healthy, quite happy, pretty productive, and, until recently, not very impaired. I have never forgotten I have cancer, but I don’t dwell on it much either. I have come to terms with the dragon perched on my shoulder. “Let’s just coexist, shall we?” I say, and the dragon has allowed me to do almost everything I want to do. But now I need naps, and I need to ask people to slow down when we’re walking, and I need to pace myself in other ways. Giving in to those weaknesses and impairments allows me, once again, to think about who I am and what my true purpose is. It is obviously not about being strong, healthy, fit, and alive forever. So it must be about choosing words, friends, stories, work and spiritual practices that are life-giving, that do honor to the Love that created me. That’s what I mean by death/life balance.

I am part of a Creation that continually dies and is reborn. I am a minuscule speck in a vast, timeless Universe. But I believe that in some way that I will never fully grasp I was meant to be here. I know I have influenced other lives. I know others have loved and guided and nurtured me. I know we will all be returned to the Earth, that the high and the low, the haughty and the meek, the powerful and the weak, all have the same fate, but Life goes on. That comforts me.

My wise friend Dr. Trelawney J. Grenfell-Muir says it beautifully:

How much wisdom Christianity would rediscover if it remembered that the butterfly is not a symbol of the resurrection; rather, the resurrection is a symbol of the butterfly… The butterfly does what it does because it is part of a creation in which Life is stronger than death. At a fundamental level, even though there are always numerous particular examples where it looks as though death or non-being have the last word, Love and Life and Light are fundamentally, existentially stronger. Being is stronger than non-being, which is why there is something rather than nothing. The caterpillar dies so that the butterfly can live. The butterfly dies so that other microbes, worms, flowers, leaves, and caterpillars can live. That is the creation we are given. We tell the resurrection story not in spite of creation, but because of it. The resurrection story symbolizes the Truth that Love, Life, and Light are stronger, which is the truth the butterfly embodies. The story has power because it is True. The story has power because the butterfly is right. No matter how bleak any particular moment, no matter how chaotic, wild, free, and arbitrary existence can seem, the Creation that cradles us is the Source of Love, Life, and Light. Darkness is a womb, a place where new Life grows. We find stories, such as the resurrection, which can point us to that divine Truth, and we recognize them as True, and when we live according to them, we manifest wellness within and around us BECAUSE we align ourselves with the higher Truth: the Truth of the butterfly, the Truth of Creation, captured in the beautiful poem of the Resurrection of Sophia-Christ. Christianity comes from a deep, ancient connectivity with the natural world… I always hope we can rediscover that connection, and so rediscover the Source of the Power of our stories, the Source of their Truth.

Joni Mitchell sang, “We are stardust, we are golden, we are million-year-old carbon. And we’ve got to get ourselves back to the Garden.” But we never really left it. It cradles us. It whispers its secrets to us. And if we live into those secrets, that Truth, we are drawn to beauty like moths to a flame, attracted to the Truth because that is what we were created to do. And in living into the Love, Life, and Light that are revealed to us, we light the way, as well as we can, for those who come behind.



posted by Amy on Jan 17

Everyone wants to be good, to be loving, and to be loved in return. We want happy families, happy marriages, and good lives. But some of us were born into families with limited repertoires for healthy attachment, conflict resolution, Basic Trust, and intimacy. Being vulnerable and authentic are not advisable, because anything real can be weaponized to injure and control. If you want to survive, you have to play a role. You have to present a false self. Your mission is to manage the other people’s moods. Your job is to keep up appearances. If you want any kind of recognition, affection, or acceptance from them, then you’d better play by the rules.

I was in a marriage that started out on very familiar ground. He treated me the way my parents, especially my more powerful parent, had treated me. Let me say upfront it could have been a wonderful marriage if we had been able to learn the lessons it presented us about where our weak spots were and what we needed to heal from and transform. There were a lot of good times. We were well matched in many ways. But both of us were playing roles we had learned in our families of origin. In my role it was my job: to keep him on an even keel, to take the blame when anything did not go as he preferred, to submit to his will, and not to ever show any anger or ask for any different behavior than what he was doing.

For many years I was perfectly happy to live by these rules. It seemed normal. I had been socialized for just such a role, and I was really good at it. He, for his part, did all the things he thought were required of a good husband and father. He had been harshly criticized and punished as a child, and his family was dismissive and disrespectful of women, so part of his role was to mete out verbal abuse to his wife and daughters, and to be dismissive, judgmental, and disrespectful of them. He once told a counselor he thought this was appropriate. My father didn’t respect my mother, and she didn’t respect herself. My marriage made perfect sense.

Until it didn’t.

Little by little, I began to wake up. I began to be dissatisfied with my role. I didn’t want to live inside a false self. I wanted to be safe to be my true self. I wanted my husband to be my ally, partner, companion, friend, advocate. I craved true intimacy. I wanted him to trust me. I wanted him to realize I’m a separate, independent human being and not an extension of him. I wanted him to believe that I was not his adversary, and that by standing up for myself I wasn’t rejecting him but instead trying to put our marriage onto sacred ground.

Around that time he started calling me “Sweetie.” He also said things like, “You’re still my trophy wife.” I’m sure he meant well. He was using the old rules about doing a good job playing our roles to try to shore up our crumbling marriage. But I couldn’t stand it, and I couldn’t figure out how to explain why I couldn’t stand it.

We were in counseling. The counselor asked if there were one thing I would like him to do differently. I said to him, “Don’t call me Sweetie. Say my name.” I think he took it personally that his good intentions behind coming up with a pet name for me were not appreciated. As a matter of fact, I didn’t receive it as affection at all. It seemed more like a threat. He was calling me Sweetie because he had finally noticed I’m not “sweet,” and I had quit trying to act sweet toward him. To me it sounded like a “change back” message. But I wanted to be Amy. I wanted to hear how he said it. I wanted validation that “Amy” was not reducible to the “wife-and-mother” he thought I was supposed to portray in the drama of his life. I think he did quit calling me Sweetie. But he didn’t start saying my name.

He remarried. It seems to be working well for them, and I’m glad. I have only ever wanted the best for him. And I really don’t know her. In over twenty years we’ve had maybe three in-person conversations, and they were not about anything substantive. I suspect “husband’s ex wife” is a stereotyped role in her mind, not requiring any actual data or input from the human being who happens to actually be her husband’s ex wife. At any rate that would be one explanation of her lack of interest in me.

posted by Amy on Jan 1

I’ve been getting various kinds of cancer treatment since June, 2011 after being diagnosed with what turned out to be advanced (or metastatic) breast cancer in April, 2011. The first confirmed cancer metastasis was in my liver. The liver lesions were resolved on the first round of treatment and have not recurred (knock on wood). I’ve had breast cancer metastases in one of my lumbar vertebrae since April, 2012 and in my lungs since April, 2013.

In late 2013 I started having a dry, nonproductive cough, and I noticed some problems breathing on exertion. Eventually the cough was diagnosed as “atypical GERD” (gastroesophageal reflux disease), and I embarked on an ever-escalating program of medications for that. At its worst, it was causing voice production problems (from acid slopping onto my larynx). For someone who preaches and sings (and talks a lot) that was annoying.

Then there was the cough I got from radiation pneumonitis. I had 12 rounds of radiation to one area of my right lung where the cancer had been causing pneumonia by blocking the ability of the downstream lung tissue to function properly. I felt really good for about two weeks after that ended (on October 3). The GERD even got better. Then I started coughing really hard and long–hard enough to gag. I sometimes coughed up various kinds of secretions. I was also having trouble swallowing. And I was very short of breath if I moved my body at all. Within two weeks of the onset of these symptoms I felt very sick.

That was early November. I started taking Prednisone for the pneumonitis, and it is helping. But by the last week of December a wandering pain in the right side of my face had gotten intense enough that I was taking Ibuprofen around the clock to dull it. Sometimes it felt like a toothache, sometimes like an ear ache, and sometimes it seemed to be in my jaw. I had a slightly sore throat. No fever, except for one night. I finally went to the doctor, and one of the questions he asked was whether I had been coughing. I told him I cough all the time, from the GERD, from the pneumonitis, and most likely from the cancer itself. He diagnosed a sinus infection and put me on antibiotics. He said that cancer, cancer treatment, and steroids can all suppress immunity, so it was no surprise that I got a sinus infection.

Come to think of it (now that the antibiotics have kicked in), there really was yet another kind of cough going on. I had the symptoms for several months, so the sinus cough undoubtedly overlapped the other kinds of coughing. And since the “wandering pain” had started “wandering” down into the part of my back along the rib cage where I first had pain when I got pneumonia in June, I would not be at all surprised if some of the inflammation in my lung was actually a low-grade bacterial infection.

But now I hardly cough at all. I can take a deep breath–or 10–without triggering a coughing fit. The scan in November showed that, except for the pneumonitis, there was a good treatment response to the radiation therapy. I am on a new chemotherapy for the cancer. The antibiotic is zapping the bacteria. And I feel pretty good.

I had “a cough” for several months (or years, depending on how you look at it), but it wasn’t just one cough. My body was trying to tell me something, but it took me awhile to get the message. It’s almost like one of those nesting Russian dolls. One kind of coughing had to be fixed before another one could be identified and addressed.

Maybe it’s the same for other kinds of bodily or psychological distress. Maybe symptoms overlap or get mixed together, perhaps masking true therapeutic effects or obscuring conditions that need treatment.

posted by Amy on Nov 27

When my cancer was diagnosed in early 2011 I began listening to guided imagery and affirmations. One of the affirmations brought me up short. It said, “More and more, I realize I can heal myself and live, or I can heal myself and die. My wholeness does not depend on my physical condition.” At that time I thought the whole point was to “beat” the cancer. What was that about dying?

As I kept doing the imagery and affirmations on the CD, and writing my own affirmations and prayers, my attitude evolved. Focusing on cancer as “the problem” and thinking that getting rid of the cancer was “the solution” had its uses, but it was too small a container for all the things I was experiencing and all the issues I was confronting. A cancer diagnosis seems like a huge emergency, and it sucks all the life and energy and strength out of you for awhile. But I eventually noticed that I, like almost every other human being, had numerous, uncountable problems, of which cancer was only one. Some of them will never be “solved” until death makes them moot. Many of them are messages or opportunities that suggest specific responses. Some of them seem completely intractable. Cancer is a significant factor in everything else I do, think, say, plan, wish for, and hope for. But it is not all-encompassing.

Thinking of myself or any change in my life circumstances as a “problem” limits my options for responding to the situation. It would be so easy to ricochet from crisis to crisis without ever stopping to think about the point of it all. Or even if there is a point.

The point, as I see it, is healing and wholeness. “I can heal myself and live, or I can heal myself and die.” This mortal frame was never meant to be a permanent dwelling place. I love my body and what it has done and can still do. I take the best care of it that I can. But there was a time before this body existed, and there will be a time that I am no longer alive. I don’t want that day to come sooner than it has to, but there’s nothing I can do to prevent it from coming. All I can do is live as well as I can here and now. And the first step is radical acceptance of those circumstances. It is what it is. Now what?

More and more, I choose relationships, projects, activities, and plans that are life-giving. I know what makes me feel fully alive, fully engaged. I also know what drains me, depletes me, robs me of hope or enthusiasm. The touchstone is love. M. Scott Peck defines love as the will to extend oneself for the sake of one’s own or another’s spiritual growth. Love is not a feeling, and it’s not passive. It is not avoidance of conflict. It recognizes the inevitability of conflict in any relationship and affirms that we grow and develop as human beings by learning to understand and respect difference. Love is a verb, an act of extending oneself, and that act of self-extension can be awkward, scary, or uncomfortable, but it is undertaken in the faith that it is our human destiny, as children of God, to love God, neighbor, and self. It can’t be a solo project. It is communal. But it’s also a matter of exercising free will. I can’t make anyone love me. And if I invite someone to be real, to be truthful, to step out in faith that we make the road by walking, and the answer is no, then I will accept that no and move on.

I’m not always sure when my attempts to show love come across as I intend, though I am getting better at simply asking the loved one how he or she feels. But I can tell when I’m loved. I can tell when my name is safe in another person’s mouth. I can see when eyes fixed on my eyes are warm and full of light, and when they are not. I can choose to go toward the light, and add my own light to it. That doesn’t mean every interaction has to be sweet and conflict-free. But I expect honesty, integrity, and authenticity from the other person, and I expect that my own honesty, integrity, and authenticity will be received in a spirit of kindness and good will. If those expectations are not met, then in the words of Keb Mo, “I don’t know what it is, but that’s not love.”

Will that make me live longer? Who knows? But it allows me to be open to all sorts of possibilities. Instead of narrowing my focus to one specific “battle,” I embrace a Universe whose guiding principle is unbounded love and grace. I am imperfect. I am mortal. I am fragile. But I was meant to be here and I am loved.

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