I heard an interview a while back with Dan Marshall, who wrote a memoir about caring for his terminally ill parents. Yes, you read that right: parents, plural. Both of Marshall’s parents had a terminal disease: his mom’s lymphoma and his dad’s ALS.
The book, Home is (bleeping) Burning, tells the story of the Marshall family, who (except for their copious and creative cussing) sound like a regular American family living their lives and doing their thing until their regular lives are upended by health crises. Here’s how Amazon describes it:
For the Marshalls, laughter is the best medicine. Especially when combined with alcohol, pain pills, excessive cursing, sexual escapades, actual medicine, and more alcohol.
Meet Dan Marshall. 25, good job, great girlfriend, and living the dream life in sunny Los Angeles without a care in the world. Until his mother calls. And he ignores it, as you usually do when Mom calls. Then she calls again. And again.
Dan thought things were going great at home. But it turns out his mom’s cancer, which she had battled throughout his childhood with tenacity and a mouth foul enough to make a sailor blush, is back. And to add insult to injury, his loving father has been diagnosed with ALS.
Sayonara L.A., Dan is headed home to Salt Lake City, Utah.
Never has there been a more reluctant family reunion: His older sister is resentful, having stayed closer to home to bear the brunt of their mother’s illness. His younger brother comes to lend a hand, giving up a journalism career and evenings cruising Chicago gay bars. His next younger sister, a sullen teenager, is a rebel with a cause. And his baby sister – through it all – can only think about her beloved dance troop. Dan returns to shouting matches at the dinner table, old flames knocking at the door, and a speech device programmed to help his father communicate that is as crude as the rest of them. But they put their petty differences aside and form Team Terminal, battling their parents’ illnesses as best they can, when not otherwise distracted by the chaos that follows them wherever they go. Not even the family cats escape unscathed.
As Dan steps into his role as caregiver, wheelchair wrangler, and sibling referee, he watches pieces of his previous life slip away, and comes to realize that the further you stretch the ties that bind, the tighter they hold you together.
In the interview, Marshall read passages from his book, and just so you know, the language and some of the topics in Home Is (bleeping) Burning may be less than pleasant for some readers. (Does it mean I’m weird/crude/uncouth/all of the above because I really relate to and enjoy the mom, who is the most prolific with her cussing?). Also note that the Marshalls live in Salt Lake City but are not Mormon, and there are some non-PC comments made about their Mormon neighbors. Perhaps this book is not for the faint of heart. But then again, neither are terminal illnesses or recurrences or sick parents. As Greg Marshall (the author’s brother) so eloquently put it: “For the Marshalls, life is a contest to see who is _____-est. Bravest. Weirdest. Grossest. We take our lack of filter to superlative heights.”
Perhaps my own lack of filter attracted me to the Marshalls’ story. It could also be because I too cared for a sick parent. I too experienced the strange role-reversal that comes with caring for a parent. I write often about the terrible yet honorable practice of becoming the authority figure and advocate for the person who, until their illness took hold, was the authority figure and the advocate for me. I write often about how my mom’s death affected me, and continues to affect me. That’s why my ears perked up when I heard about Dan Marshall and his memoir.
This passage got me. Hit me hard. Reminded me of my own sweet mama (without the cussing). This passage describes the family discussion on Christmas day. The topic is how the family will handle Mom’s lymphoma recurrence and Dad’s new ALS diagnosis. Dan described his mom’s stance upon learning her cancer had come back:
“She wasn’t just going to roll over and let cancer f*** her to death. She was going to fight and fight hard. And she suggested we all do the same.”
Indeed. May we all do the same.
Last week marked 6 years since I was diagnosed with breast cancer. I thought about it a few times on the actual day (April 27) but found myself pushing any thought out of my head. Not because I shy away from thoughts of my cancer “journey” — good luck getting out of such thoughts, y’all; anyone who has been down this road or who has watched as someone they know has gone down this road knows that is a futile effort. That’s a very long sentence with a simple idea at its core: if you have been diagnosed with a serious illness, thoughts of that illness come randomly and often.
Personally, I’m in a limbo-like state of wanting to acknowledge the passage of time between D-Day and today, while also not tempting fate. My rational brain knows that recurrence and fate are not intertwined, yet my scardey-cat brain wants to skate far from any potential jinxing.
I’m not at all sure what to say or how to feel about 6 years NED (no evidence of disease). I hate to even type that acronym, for fear of unleashing the beast that has already turned my life upside-down and left me permanently changed. I feel like a shit-heel for even mentioning my NED status when so many lovely people (many of whom write stellar blogs) currently have cancer as a recurring character in their lives. I know that could just as easily be my fate, and I know that it still may be my fate.
See, that’s the thing about having had cancer. Regardless of type or stage, once you’ve heard a doctor say some version of “It looks like cancer” you will never be the same. If you happen to be one of those who believe that cancer is a gift, you may want to stop reading right now and head on over to another website — any other website — because I remain resolute in my opinion that if cancer is a gift, I say no thanks.
In reflecting on 6 years post-cancer, I remembered a letter I wrote to my younger self. I need to re-run it, and I need to do that now.
Dear Younger Me,
Listen up, missy: that college dream of yours to light Madison Avenue on fire with clever advertising campaigns isn’t gonna happen. You don’t like the Big City — too many people and way too many germs. That other dream of writing children’s books isn’t going to happen, either. At least not anytime soon. You do end up reading a whole lot of good ones, though, to a couple of precious kids who look so much like your baby pictures it’s scary.
Your smart mouth will get you into a fair amount of trouble. I’d tell you to be careful, go easy, and use restraint, but we both know you’d flip me the bird and keep right on sassing. I can tell you that eventually you do learn the fine art of holding your tongue, but it will never come easy.
That sweet, loyal, smart, cunning and unmatched yellow dog who grips your college-aged heart will never let go. She will protect you, and then your children, for nearly 15 years. She will guard the entrance to the nursery and sleep under the crib. She will show you her back when you get out your suitcase, because she knows you’re leaving, if only for a few days. Her time on this Earth will grow short but she will stick it out longer than anyone expects because she will insist on seeing you through an even rougher patch: the death of your sweet mama.
Guess what, girlie? Your sweet mama keeps a tight grip on your heart, too. Not a day passes without you feeling the loss, in big ways and small ways. (Note to self: don’t give up on trying to make her pie crust. It won’t ever be like hers, but keep trying.)
Just about the time cancer steals your beloved mama, you’ll start getting an annual mammogram. You’re ahead of the schedule thanks to that mama-stealing cancer, and every year the mammogram will come back funky. Don’t settle for the “dense tissue” rationale. There’s a tumor growing, and it ends up taking up a lot of space, both in your body and in your life.
Look, I know you’re going to be busy living your life and raising those two little kids when the diagnosis comes, but please, brace yourself, because it’s going to get ugly fast. And say a little prayer to the environmental-services gods who control your operating room on the day of your mastectomy; maybe we can avoid that post-mastectomy infection that will reorder your life. And BTW, the bilateral mastectomy was totally the right choice. Good girl for following your gut. There will be no hint, not a single whiff, of cancer in your left breast, but it’s there.
Give up right now on thinking your cancer “journey” will be “one and done.” It will be more circuitous than you can ever imagine, and it will change you in ways you won’t discover until years later. Oh, and before you even begin that circuitous journey, you’re going to have to deal with melanoma on your right foot. I know, who puts sunscreen on their feet, right? Hate to tell ya, that even though you catch it early, the surgery to remove the melanoma will be the most painful thing you will experience. Yes, it’s worse than childbirth and a bilateral mastectomy. Oh yeah, about childbirth–when your water breaks, the baby is coming. Yes, he’s early. No, you haven’t finished the birthing class or packed your bag, but it doesn’t matter. And you’re going to get teased for decades for reading ahead in that “What to Expect” book on the toilet in the middle of the night when your water has broken and your much-better-prepared spouse sleeps peacefully, unaware of your foolishness.
It turns out fine, the baby is healthy (but hard-headed). Even the cancer thing is manageable. Not easy, but manageable. I think we both know you can handle it. You’re going to learn a lot, whether you want to or not. Your limits will be tested. You’re going to make some true and life-long friends along the way. You’re going to unload friends, too, in one of many hard-learned lessons. You see, there are people who are willing to give what they want to give, not what you need. This is a very important distinction. Trust me, you’re much happier without ’em. A couple more pieces of advice: first, don’t ignore that knee pain while you’re running. Stretch before and after you pound the pavement. Listen to your body. Pain is its way of saying something is wrong. Ice your knee after each run. I know it’s a hassle, but so is living with constant pain. Years down the road, you’re going to be embarrassed by how you hobble down the stairs like a woman twice your age. You’re going to be frustrated by the ways in which your body fails you. I don’t have an answer for how to deal with that, because I haven’t figured out how to deal with that. I do recommend drinking champagne as often as you can. I don’t have to tell you to never, ever pass up an opportunity to drink some bubbly. The lesson I want you to remember is that the sound of that popping cork will soothe your soul, every time.
On this day of Thanksgiving I would love to be writing about today’s feast. About the recipes I’m trying, or about the traditions we keep alive year after year. Instead, I’m writing about my new knee.
I am 17 days post-op. Seventeen long days. Each of those 17 days so far has challenged me, pushed me, and damn near broken me.
This recovery is hella hard. Crazy hard. No amount of advanced research could have prepared me for how hard this is. The thing that is different about TKR compared to my other surgeries, is that after 17 days, I don’t feel any better. How strange to have spent more than two weeks getting to know my repaired knee without feeling better. Intellectually, I know that I am doing better and am making progress, but I don’t feel it. Every day, my in-home physical therapist measures the angle at which I can bend and flex my repaired knee. Progress is underway, but it is slow going. PT is brutal in all the ways one would imagine: pain, cursing, swelling, cursing, stiffness, cursing. Recovery for a TKR averages in the neighborhood of 12 weeks and can stretch out even longer in terms of making noticeable physical progress. I’ve read many times that the pain from a TKR can last 6 weeks. I can very easily imagine that. So far I’ve had nearly constant pain that is only slightly alleviated by some strong-ass narcotics. Getting used to constant pain requires an attitude adjustment on a whole ‘nother level. I’m still adjusting.
The fleecy sled in the photo above is my CPM (continual passive motion) machine. For two hours at a time, three times a day, my repaired knee gets bent and straightened over and over. After a while it feels like I’m constantly moving, even when I’m not hooked up to the CPM.
This Thanksgiving, my thoughts are not about the feast. When I glance at the clock today, it won’t be related to how long the pie has been in the oven, but about how long it’s been since I had a pain pill. Instead of chopping veggies, I’ll be trying to cut a deal with the universe for some super-fast healing. Rather than slowing down to enjoy the holiday, I’ll be trying to figure out how to make time go faster, so I can be done with this totally kraptastic recovery.
Ten years ago today, I got the call. The call I’d been dreading. The call from my dad to tell me that my mom was dead. I was in my car, in line to drop my #1 son at school. He was still in the car, but I answered the phone because it was my dad calling. Trying to respond to him while cloaking my words in a way as to not upset my 6-year-old was hard. Living the last 10 years without my mom has been even harder.
I’ve written much about my sweet mama and how much I miss her. I’m not sure that there are new ways to say, I’m sad. I miss her. I feel lost sometimes. I worry that I don’t do enough to keep her memory alive. I can’t believe she’s gone. I don’t want to live the rest of my life without her. I’m afraid I don’t mother my kids as well as she mothered me. I’m totally pissed that she’s gone. I was robbed. She was robbed. It still hurts, a lot. It’s better, but it still hurts.
I miss her. So much.
I’ve been torn today, between wallowing in the sadness and doing the kinds of things she respected. Between feeling sorry for myself and being productive. Between having a shitty day and “walking on the sunny side of the street” (the latter was how she bid me farewell every day when I left for school when I was little). How can I walk on the sunny side of the street when the sunshine is gone?
Lately, much has been written about the rush-to-mastectomy decisions adopted by women with DCIS diagnoses. DCIS (ductal carcinoma in situ) is the diagnosis given when abnormal cells reside in the milk ducts. It is precancerous and noninvasive. It is not life-threatening, although it can lead to an increased risk of developing an invasive cancer. While it is unquestionably scary to receive such a diagnosis, some in the medical community are questioning whether a slash-and-burn reaction to DCIS is appropriate. The current standard of care for DCIS is surgery and radiation. A natural reaction for a woman with DCIS is to undergo the most far-reaching form of treatment available. I won’t argue with that, because no one has the right to judge another person’s reaction to or decisions toward a cancer diagnosis. Anyone who tries to should be punched in the brain. Repeatedly.
That said, data don’t lie, and the case being made for a less-aggressive approach to DCIS is gaining ground. Dr Laura Esserman, a breast surgeon at the University of California, San Francisco, is setting the pace. In a recent New York Times article, Esserman says her goal is “to move the field and do right by our patients.”
Instead of immediately ordering biopsies for women with unsettling findings on their mammograms, Dr Esserman recommends active surveillance. She favors the “wait and see” approach, speaking out about the myriad ways in which a woman is adversely affected by slash-and-burn treatment for cancers that rarely progress beyond DCIS.
Dr Esserman is bringing to light the fact that mammograms — while valuable — find the slow-growing, non-metastasizing cancers that lead to panic more than they find the most lethal forms of breast cancer. She is lobbying for big changes in the early-detection world and has asked the National Cancer Institute to consider dropping the word “carcinoma” from the DCIS label. Instead, Esserman would like for DCIS to be renamed “indolent lesions of epithelial origin.” IDLE would replace DCIS as the way to describe a stage 0 diagnosis. IDLE is catchy and much friendlier than DCIS, if you ask me.
This woman is turning the breast-cancer world on its head, and I like it. In an era of less face-time with doctors, Dr Esserman spends as much time as needed with each patient, often texting or calling them at home. A big part of her “wait and see” approach to DCIS is asking the patients soul-searching questions and utilizing specific testing to gather further evidence before recommending surgery. She’s pushing for more innovation in clinical trials and for fine-tuning the process of screening for breast cancer. In cases for which she does recommend surgery, Dr Esserman counsels and frets like a family member, and even sings to her patients as they undergo anesthesia. Personally, I’d much prefer a serenade to a prayer before I go under the knife. I can imagine her patients, smiling and relaxed, as they enter the last blissful sleep they will enjoy for a while to come.
I love Dr Esserman. I don’t know her, but I love her. I love that she’s crashing through long-standing views and taking the road less traveled. I believe she will enact great change in the landscape of breast cancer. I wonder how I would have reacted to my own breast cancer diagnosis if mine had lacked an invasive tumor. If my cancer was simply DCIS, would I have chosen a different path? I don’t know, but I do know how scary my diagnosis was. I know that the scorched-earth treatment plan was right for me. I had watched my mom die from cancer at age 67. My kids were still in grade school when “the C word” was applied to me. I wanted to be as aggressive as possible, so my choice was to go balls-out against cancer. And it’s a good thing I did, because my “non-affected” breast turned out to be riddled with cancer. Nothing showed up, though, on any of the screenings. Nothing. When Dr Esserman mentioned that mammograms don’t find the more lethal forms of breast cancer, I nodded my head knowingly and actively talked myself off the roof rather than allowing myself to think “what if?” What if I had chosen a single lumpectomy or single mastectomy, and that smattering of cancer cells and Paget disease in my “unaffected” breast had continued to evade detection? Would I be sitting here, typing this post? Would I be glancing up from my computer to see this guy outside my window? What if?
Remember seeing this photo in the aftermath of the terrorist attacks on the World Trade Center on September 11, 2001?
Marcy Borders, who came to be known as “the Dust Lady” survived the WTC attack after fleeing her office on the 81st floor of the North Tower. She was 28 years old. That terrible day set off a chain of events that ended tragically: on Monday, Marcy Borders died, at age 42, from stomach cancer.
Borders suspected a connection between the terrorist attacks and her cancer. In an online interview, she wondered if her experience on that terrible day caused her cancer: “I’m saying to myself, ‘Did this thing ignite cancer cells in me? I definitely believe it because I haven’t had any illnesses. I don’t have high blood pressure … high cholesterol, diabetes. … How do you go from being healthy to waking up the next day with cancer?”
That’s a question many of us have asked. Whether young or old, the question of how one goes from healthy to cancer-ridden remains, and that question can haunt those of us who have stared into the eyes of the beast that is cancer.
For those who were at Ground Zero, that haunting question becomes a common refrain. It’s hard to know just how many cancer diagnoses resulted from events surrounding the terrorist attacks, but we do know that first responders and civilians fleeing the towers were exposed to a nasty combination of carcinogens. This toxic dust is likely responsible for the fact that people present in the terrorist attacks have gotten certain cancers — skin and prostate cancers as well as non-Hodgkin’s lymphoma and mesothelioma — at significantly higher rates than people in the regular population. Even now, more than a decade later, the lingering health effects remain unknown, but experts suspect the full extent of cancer and 9/11 will begin to emerge, as it has with Marcy Borders.
Photographer Michael McAuliff was also at Ground Zero on September 11, covering the events for ABC News. He too wondered how his health was affected by the dust that covered Marcy Borders and everyone else in the vicinity. He collected and saved the dust that covered him as he worked on September 11, 2001, and recently submitted the dust and his computer bag he carried that day for testing. When the test results arrived, McAuliff discovered:
“About half the material was ‘non-fibrous’ including polystyrene foam, vermiculite mineral, combustion product (carbon soot), mineral dust of gypsum, calcite, dolomite and quartz. The other half was fibrous material including “cellulose (wood and paper fragments), fibrous glass such as glass wool with yellow resin coating, Fiberglass, colorless mineral wool, refractory ceramic fibers, limestone, calcites, carbon fibers, synthetics (including fragments of cloth) and chrysotile asbestos associated with the lime and carbonate insulation debris. Also found were ‘additional chemical signatures of silicates, kaolin clays, pigments (TiO2), calcites, dolomites, carbonates, metal complexes (sub-micron chromium, aluminum/iron matrices) and chrysotile asbestos.’ Metals included small amounts of lead, chromium, zinc and cadmium.”
McAuliff seems to have dodged a bullet and has received a clean bill of health. Unlike Marcy Borders.
Surviving the terrorist attack was just the beginning of a long battle for her. In an interview, Borders said “it was like my soul was knocked down with those towers.” Her battered soul endured depression and drug addiction. “My life spiraled out of control. I didn’t do a day’s work in nearly 10 years, and by 2011 I was a complete mess. Every time I saw an aircraft, I panicked. I started smoking crack cocaine, because I didn’t want to live.”
Ten years later, Borders decided she did indeed want to live, and in April 2011 she entered rehab. She worked hard to reclaim her life and move forward. She got sober and committed herself to putting that terror behind her, saying “The anniversary of (9/11) gives me no fear. I’ve got peace now. I’m not afraid of anything. I try to take myself from being a victim to being a survivor now. I don’t want to be a victim anymore.”
Rest in peace, Marcy Borders, and know that you are much more than “the Dust Lady.” You are proof that we can endure terrible things and come away with peace.
I’ve been in need of a reason to sit down at my computer and bang out a blog post, but I’ve been lazy. Chalk it up to summertime and its glorious release from the grind of our daily schedule. Thankfully, the blog challenge put forth by Nancy’s Point and taken up by Marie motivated me to shake off that laziness and get to it.
15 things. Random things about me. I know y’all have been itching to know more about the inner workings of my particular brand of crazy. Have at it.
1. I love animals and have been accused of loving critters more than people. To which I say, it depends on the person.
2. Meat in any form grosses me out, big time (correlation to fact #1?). I still cook chicken and turkey for my family but wear latex gloves to handle the raw stuff, and the process of picking out a package of meat at the grocery store usually makes me want to barf. Because we have a pet pig, pork is obviously a no-go in my house.
3. Being organized makes me happy; chaos makes me hyperventilate a little.
4. I have an addiction to lip balm. I have tubes of my favorite kind stashed everywhere: in the kitchen, in my car, on the patio….I leave the lids off so I can grab the tube, swipe it on, and keep moving.Every chance I get, I visit a different grocery or drug store to look for my favorite kind. When it seemed to be getting scarce, I ordered an embarrassing quantity online. When my favorite girl saw that stash she asked if I had robbed a Blistex salesman. Ha, ha, very funny.
5. I love books and am torn between relishing the heft of a real book and being seduced by the convenience of ebooks.
6. Patience is not one of my virtues. Being stuck in line drives me crazy, as does a pokey driver in the left lane or a string of people walking slowly.
7. Similarly, I struggle with diplomacy. I want to say the right thing, the kind thing, but the harsher, more direct version is what comes to mind first.
8. I would love to speak a second language. I took Spanish in high school, but my teacher was a childhood friend of my dad’s and I had yet to master the art of working hard despite the easy out. Or easy A, as the case may be.
9. Physical activity lights my fire. I love a grueling workout, a multi-hour tennis match, an afternoon digging in my yard.
10. I get a huge dose of satisfaction from being productive and am not so good at sitting still.
11. I’m a foodie and am usually thinking about lunch as I’m eating breakfast. I used to tease my sweet mama for doing that, and now I do it, too.
12. I didn’t like beer for more than 20 years, but being on long-term antibiotics after a nosocomial infection changed my taste buds. There are few things better than the first sip of an ice-cold beer.
13. While on the topic of booze, I should confess my undying love for champagne. It makes every occasion a special one.
14. I’m a germophobe. People coughing or sneezing in public makes me cringe, as does the idea of sharing a cup with someone else. People who share a toothbrush are like aliens to me. I cannot wrap my head around that concept. Eww.
15. I love lists and always have a to-do list going. Perhaps that’s why the idea of a post listing 15 things appealed to me.