Archive for the ‘Uncategorized’ Category

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.

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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.

posted by Amy on Sep 11

When I was in Philadelphia last June I came down with pneumonia and ended up spending 28 hours in the ER. They gave me IV antibiotics and pain killers, monitored my progress, and sent me home with a week’s supply of pill versions of the two antibiotics they’d been putting in the IV. I returned to Denver, recovered from the pneumonia (or so I thought) and went on about my business.

Then one night when I went to bed I felt something like strained muscles on the right side of my back, over the rib cage. I thought, “What did I do to pull muscles on just one side of my back?” In the morning I realized it was a milder version of the pain I had when the pneumonia first flared up. I called my primary care provider and explained I had recently been in the ER with pneumonia and thought it might be coming back. The person answering the phone offered me an appointment two days later. I said, “Do you really think it’s a good idea for me to wait two days to find out if I have pneumonia again?” She said there was nothing she could do. I guess primary care providers no longer keep open slots in their schedules for patient needing urgent care. Instead you have to go to one of those new “doc in a box” places that don’t know you, don’t have your records, and may not be covered by your insurance. Or you go the ER.

“Lucky” for me I’m a cancer patient, so I called my oncologist’s office, and they got me in within the hour. The nurse practitioner put me back on the same two antibiotics, this time for 10 days, and ordered a scan of my chest. While I was still taking the pills I saw my oncologist for a treatment appointment, and she extended the time period to 14 days. She also freaked me out with probing questions about whether it was actually an infection (Did I have a fever? Did I get better with antibiotics?) and a suggestion that I look into palliative care. And she said I should go consult with radiation oncology. She showed me the scan. The metastasized breast cancer in my right lung is blocking the airway. The infection is “downstream” from that, and my body can’t clear it. Radiation treatment could shrink the tumor and allow my body to defeat the bacteria that I’d been harboring for so long.

This is the first time in over five years that my stage IV cancer has directly affected my health.  It was sobering.

I made an appointment with radiation oncology. The first doctor I talked to, a senior resident, asked me what I understood about why I was there. I told him. He was surprised, I think, that I had such a good grasp of it. We talked some more, about my history with cancer, my health overall, and my life. I told him we’d been getting good cancer control with chemo almost everywhere, and my lungs are the only real problem area. He talked a bit about why it’s hard to control lung tumors with chemo. In the course of that conversation he changed his mind about how much radiation I should get and what the treatment goal should be. He said, “You look really great. You don’t look like you have cancer. We were going to do a short course just to shrink the tumor temporarily, but, though I have to get my attending physician to agree, I think maybe we can get rid of it.” I told him I’d been wondering for at least two years about local treatment for my lungs, and I was all for it. His boss agreed. They listened to my lungs and said the lower right lung was blocked again. I saw my medical oncologist later that week, and she prescribed another 10 days of antibiotics.

The next week I went in for a preparatory appointment where they made a “cradle” for me to lie in and gave me some tiny tattoos on my abdomen so I can be lined up in exactly the same position every time. They also did imaging so they could do 3-D modelling to plan where to aim the radiation. About ten days later I had my first radiation treatment. I have had four of the first six daily (Monday through Friday) sessions. After I’ve had six there will be a six-day break. Then I’ll go in for further imaging, and be scheduled for another six treatments at a higher dose. The reason for that is that initially it’s hard to tell cancer from infection. It’s hoped that there will be less cancer and less infection after the first round, so the radiation can be focused more precisely on the cancer. So far I’m tolerating it well, with few side effects. And my symptoms are diminishing.

The other day I had a thought. If local treatment is a good idea now, after a trip to the ER and walking around with a chronic bacterial infection for two and a half months, wouldn’t it have been an even better idea back in March, when a scan showed I had no detectable cancer in my body except in my lungs, and the cancer there was getting more active?

I think what is needed here is a more robust definition of “palliative intent.” Since my cancer is not curable, my treatment goal is “palliative:” to keep me as comfortable and healthy as possible, and to enable me as much as possible to live the kind of life I want for the time I have left. It seems to me that there is a lot of overlap between “palliative” and “curative” care. This situation is a perfect example. Getting rid of the cancer in my lungs with a proven, relatively low-risk therapy, even if it comes back later, is much better than sitting by and watching it grow, and letting it cause consequences like pneumonia. I have been getting cancer drugs continuously for over five years. They must be doing some good in my lungs, because I’m still alive, but it obviously hasn’t been ideal. Six months ago I was half a year younger and less sick. If I’m a good candidate for a relatively aggressive treatment plan now, then it was all the more so then.

I’m going to have a chat about this with my oncologist.

posted by Amy on Aug 22

I’ve traveled a bit this summer, and I’ve seen some people I don’t often see. They usually tell me I look great, and ask me how I’m doing. I usually say, “I’m fine. I still have cancer.” That usually draws a quizzical look, or a story about someone who “beat cancer.”

My cancer had already reached the incurable, final stage when it was diagnosed. It is “manageable” and “treatable,” but not curable. But here I am in the sixth year since that happened, and I really am fine.

When I was first being treated for cancer it struck me as odd that the health care providers always asked, “How are you?” I’d think, “How do you think I am? I have cancer and there’s virtually no chance it won’t end up killing me.” But, over time, I settled into the routine and learned to work around that little bump in the road. For me it has been relatively easy. I don’t have a lot of impairment from either the cancer or the treatments. I know I’m lucky.

But I’m not just lucky that living with terminal cancer is going so well for me right now. I’m lucky I didn’t die before I lived long enough to get cancer. I could have succumbed to any number of other threats by now: car wrecks, drowning, lightening strike, meningitis, complications of childbirth, some less manageable cancer. . . . . Human bodies are fragile, vulnerable, mortal. I am going to die. So are you.

Say you don’t know for sure you have a terminal illness. Someone asks how you are and you usually say, “fine.” That may not actually be true, but the questioner kind of expects you to say that, and would be very surprised if you said “I’m gonna die!” In truth, unless you do know you have a terminal illness, you probably don’t think a lot about your fragility or mortality, and neither does the person who said, “How are you?” When someone who hasn’t seen me in awhile asks it, I’m pretty sure they assume that since I am still alive, have hair, and look healthy, I must not have cancer anymore. I don’t want them to make that assumption, so I give my standard answer. But since every single one of us is going to die someday from something, we could all be answering, “I’m fine. I’m happy. I’m glad to be alive. I’m going to die.”

More and more, I see value in my showing up, doing normal stuff, starting projects that take time and effort, continually trying to be a better human being, AND doing my best to make sure no one is shocked when they find out I died. Just shoot me if you ever hear me say cancer was a blessing. I like to think I’d have figured this stuff out just from getting older, losing loved ones, and gaining wisdom. But I do think having death as a constant companion has made me much less afraid to live.

You don’t need to get cancer to figure it out. Don’t be afraid to live. This is not a dress rehearsal. Be honest. Be authentic. Be brave. Be good. Be loving. And if there’s anything you’ve been wanting to do (and it doesn’t break any of the 10 Commandments) then just do it.

posted by Amy on Jul 19

When I saw my oncologist last Friday she told me that I need to maintain my weight in order to support my immune system. She ordered me not to lose any more weight. When I went to get my infusion I had my nurse look up how much I weighed in September when I started being treated at University of Colorado Hospital. I’ve lost 18 pounds since then. I remember how much I weighed after my first round of cancer treatment five years ago. I was getting steroids, which made me ravenous (and really mean, but that’s another story). I now weigh 40 pounds less than I did then.

There are several things going on here. In 2014/2015 while I was getting some counseling I figured out that I had a subconscious fear of being hungry. I usually ate nutritious food and didn’t have a sweet tooth, but I was just a bit obsessive about responding to any and all hunger pangs. I decided to just start noticing when I was hungry and detaching from any feelings about it, rather like one does with intrusive thoughts while meditating. Then I decided to see if I could satisfy hunger with somewhat smaller portions. There were no rules. I wasn’t “on a diet.” I ate whatever I wanted, whenever I wanted. I had been operating from a scarcity mindset. I began to trust that all my needs will be met, including but not limited to my need for food. And my body slowly began to return to its natural weight.

But eating has become a bit of a chore in the last year or so. I don’t need to detach from feelings about hunger pangs because I either don’t get hungry or don’t notice I’m hungry. Also some cancer treatments cause loss of appetite. Now that I’ve been told my life may depend on not losing any more weight another dynamic is coming into play. I don’t like being told what to do.

And there’s that lifetime of messaging from the culture and my family that my worth as a human being depends on my being thin. I have spent so much time and energy–all my life–obsessing about my weight. At one point in my teens I was borderline bulimic/anorexic. For most of my life I have hated my body, meaning I hated myself. I punished my body, meaning I punished myself. I exercised obsessively, dieted obsessively, read books, kept journals, recorded my weight and measurements, joined gyms, bought exercise videos, etc. etc. etc. I also rebelled from dieting, exercising, weighing, measuring. I didn’t want to conform to societal norms and expectations. I wanted to be loved and accepted for my mind, my heart, my deeds, not the shape of my body. Keeping a nice, squishy layer of extra flesh may have been a way to protect myself from the attention and intimacy that I both craved and feared. Now I weigh less than I did my senior year in high school, and it happened almost automatically. In a secret, sick way, one part of me may see this as a payoff.

The healthy part of me recognizes how insane that thinking is. I want to live, and I want to stay as healthy, strong, and vital as possible. My doctor said to get more calories. After a lifetime of specializing in knowing exactly how many calories are in everything that goes into my mouth, that should be a no-brainer.

I’m writing this post to identify feelings, triggers, and ghosts from my past. I don’t have any answers at this point.

 

 

 

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