Hey there, it’s been a while! Countless times in the last several months I’ve thought, “I really want to write something for my blog” and yet….Life gets in the way. Big time. But here I am, so let’s get to it.
It’s been busy around here, with my firstborn graduating from high school and preparing for college. Lots of changes in the last couple of months, and lots more to come. In April, my boy played his last baseball game. In May, he turned 18 and went to prom. In June, he graduated high school. In August he will leave for college.
I suppose I’m joining the ranks of parents around the world who wonder: wasn’t it just the other day that my kid started kindergarten? Wasn’t it just last week that my sweet little boy wore a paper tag around his neck with his name and bus number? At the risk of sounding like Tevye in Fiddler on the Roof, wasn’t it yesterday when he was small???
It goes without saying that I am proud of this kid. Although he received a scholarship to the University of Houston, he chose Texas A&M University (the hubs and I both try not to wince or whimper about the fact that our son will wear maroon instead of our beloved burnt orange).
Time is a funny thing: moving glacially slowly in some cases, yet zipping by at warp speed in other cases. I’d heard many times the sage advice to “savor every minute” of my firstborn’s senior year, and despite my best effort, those minutes slipped by and disappeared. We celebrated P’s senior-year milestones and I reminded myself to be present, to drink it all in rather than getting bogged down by the long list of things to do.
The Spring Sports Banquet was a bittersweet milestone: the pride in P’s winning the MVP Award was tinged with a wee bit of sadness that his baseball career was winding down.
Something tells me that once he leaves for college next month, I’ll be looking at this photo rather often. Baseball has been a huge part of our life. Season after season, we savored the wins and mourned the losses, and we watched this boy become a young man.
On the last home game each season, our school tradition is to honor the senior players in a post-game ceremony, in which the seniors and their families take the field and the announcer reads a letter from the parents to their son and then we present the boys with a keepsake bat. This year, P’s team was locked in a duel for a championship slot, and sadly the Knights fell short and lost the playoff bid (hence his long face after the Senior ceremony).
I’m really going to miss the sweet sound of a bat connecting with the ball. We have spent an awful lot of time in the stands cheering him on (and I spent an awful lot of time pacing the grounds during especially close games). This boy learned to hit a pitched ball at age two and never stopped swinging. Baseball was his first true love, and I suspect the game will always hold a special place in his heart.
We didn’t mourn the end of baseball too long, because shortly thereafter it was time for prom! What is it about boys in tuxedos and girls in evening gowns that is so captivating? As senior year winds down and prom night finally arrives, the juxtaposition becomes apparent: the excitement of what lies ahead, coupled with the memories of the last four years.
Right on the heels of prom was the graduation ceremony and party, a blur of activity and a house full of the people who mean the most to us. So much activity that we failed to take many photos (perhaps the sign of a truly good party — we had so much fun we didn’t even think about taking pictures!).
One of the highlights: this blanket made from his Little League shirts. I like the idea of him taking all those memories with him to college.
My boy was a week shy of turning 10 when I was diagnosed. Double digits for him, a double mastectomy for me. Eighteen years ago, with the birth of this kid, I went from a being a regular person to being a mother. Eighteen years seems like enough time to prepare for the end of an era. And yet, it’s just not. I’m a believer in the notion that kids leaving home means parents have done their job. However, as it is with many things, it’s easy to be a believer before that notion becomes a reality. The tricky part is remaining a believer as one faces the end of an era.
Swiftly fly the years.
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.
Today is World Cancer Day, and rather than rehashing my own cancer “journey” I’m thinking about Stuart Scott.
A longtime ESPN anchor, Scott was a familiar presence in my house. His wordsmithing appealed to me, as did his irreverancy. In a world populated by former jocks and professional windbags, Scott contributed a cool combination of intellectual breadth and liveliness. Scott’s colleague Dan Patrick once said about Scott that “he didn’t just push the envelope, he bulldozed the envelope.” I’m a fan of bulldozers.
Scott was diagnosed with appendix cancer in 2007. Yes, you read that right: appendix cancer. Weird and rare, there are an estimated 1,000 cases of appendix cancer in the United States annually, compared to nearly 300,000 cases of breast cancer every year in this country. Perhaps this is another reason I relate to Stuart Scott: between his appendix cancer and my post-mastectomy mycobacterium infection, we both faced the question of “who in the world contracts that??”
Stuart Scott wrote a book about his cancer “journey,” which explains his gladiator approach to confronting his disease. The cancer community is divided on the “battle” aspect of the cancer fight — some people love the idea of a cancer warrior while others are uncomfortable with the war metaphors — but one thing I know for sure: the cancer experience is a fiercely personal one, and no one has the right to tell another how to do it or which analogies to use.
I read an excerpt of Scott’s book and am hungry for more. He was a gym rat, like me, and he leaned heavily upon his workouts during treatment, both for physical strength and for mental health:
“I can’t tell you how important it felt to go from the chemo infusion center to the gym. There were patients at the infusion center who were gaunt and too weak to walk. I wanted to hug them. I wanted to work out for them. It took about fifteen minutes to get to the gym from the infusion center, but I felt like I was traveling a great distance: from the land of the sick to the land of the recovering. I’d work out three or four times a week, but the most important workout was the one right after chemo. It was like I was proving a point: While you kick my butt, cancer, I’m gonna kick yours.”
In thinking about the name of one of the drugs in his chemo cocktail, Scott realized “The medical name of the medicine is fluorouracil, but they call it 5-FU. That’s what it said, right there: 5-FU. All right, I thought. A sign. FU, cancer.”
FU cancer. Indeed.
Scott continues: “My return to the gym felt kind of spiritual. I wasn’t really supposed to run since I was still connected to the port that was giving me my medicine. I looked down, and my eye caught the logo of the manufacturer of the machine I was on: LifeStyle. That word jumped out at me: Life. I thought back to the first thought I had when [diagnosed]: I’m going to die. But I was still here. And here I was, not forty-five minutes out of chemo, and I was in the gym, doing what I do. I started to run. What could be the harm? The disease wasn’t in control. I was.”
That sense of control is of epic importance in the cancer “journey.”
Scott explains it like this: “Mentally, I needed to be in that gym. I’d talk smack to cancer like Ali talked to his opponents. A third set of push-ups? Take that, cancer. Twenty full-out sprint pass patterns? Cancer, you ever run up against this? Some kicks and punches into the middle of the heavy bag after the elliptical? I got yer cancer right here! I needed to do that, not just to show my girls I was fighting for them, but also to show myself I had some control over the situation. ‘Cause cancer wants to take control from you. You’ve got to very purposefully stand your ground. That’s what going to the gym is to me. I decide, cancer.”
A few weeks ago I came across the late ESPN sportscaster’s speech about his cancer “journey” at the ESPY awards last summer. That speech is powerful. Here’s the link so you can check it out.
Scott was awarded the Jimmy V Award at last year’s ESPYs and joins an acclaimed list of courageous and inspirational people from various corners of the sports world. Perhaps his career as an on-camera personality gave him the extra flair that made him such an engaging speaker. Maybe that was just his personality. Either way, his speech is compelling.
The take-away message, for me, lie in these words from that speech:
“When you die, that does not mean that you lost to cancer. You beat cancer by how you live, why you live and in the manner in which you live.”
Stuart Scott taught me a huge and valuable lesson. He did die, but he did not lose. How he lived proves that. Today, on World Cancer Day, I honor Stuart Scott. While at the gym, I will think of his no-mercy approach. I will remember all the days in which I was that patient too weak to walk, and I will silently thank him for all the times he worked out in my stead. For all the times he went straight from chemo to the gym and said FU, cancer.
Two weeks into this new year, I am wrapping my head around a whole ‘nother challenge. This new game has nothing to do with cancer (for the moment, anyway — knock wood) but concerns the myriad ways my body challenges me. I refrain from classifying those challenges as failures, i.e., the many ways in which my body is failing me, because that is the new game: the mental side of physical illness.
I’m a fierce player in all aspects of the game that is confronting health issues. All aspects except the mental game. I suck at that part. Give me the worst-case scenario (mycobacterium fortuitum, I’m talking to you) and I will slay it. Give me a long, difficult road on which to travel, and I will keep on truckin’. But tell me that the only weapon I have in which to fight is my mind, and I’m hosed. Tell me to stay positive and look on the bright side, and I struggle. Offer me platitudes and I will want to punch someone. Outlook: not great.
Some of the news ways in which my body challenges (fails) me are minor: graduating to the bifocal club, or needing to hit the hay well before midnight. To those challenges I say let’s call a truce. But the bigger challenges are well, bigger. And more challenging. There are three bad guys vying for attention these days: the bad knee, the wonky thyroid, and carpal tunnel syndrome. Awesome.
The bad knee is acting up and acting out. Again. Three surgeries and countless rehab exercises mean nothing to that old hag. The misaligned kneecap is screaming for attention, and the missing cartilage is hunkering for its piece of the pie. Two very squeaky wheels in an already crowded field. The second round of synthetic synovial fluid injections did little to appease the missing cartilage. Despite the giant needle being jabbed straight into the innocent flesh adjacent to the bone-on-bone area, relief evaded me. Upon reviewing my day-after-Christmas x-ray, my orthopedist shifted gears from a previous recommendation of partial knee replacement to osteotomy, which requires cutting the bone at the top of the tibia and using plates and screws to relocate it in its proper place. The one word that comes up when researching the recovery for this surgery: brutal. Standard care is crutches for two weeks and a cane for a month alongside endless physical therapy. Thanks but no thanks.
The thyroid is being an asshole, as well. Long story short: underactive thyroid, two daily meds, and two nodules that may or may not be problematic, and dissenting opinions by my crack medical team as to whether another thyroid biopsy is needed. Being the fierce player that I am, had my crack team concurred, I would have promptly had that biopsy. As much as I detest the idea of another needle being stuck IN MY NECK, I will do it if it’s necessary. But if there is dissent on the matter, I’ll defer. That said, that asshole thyroid has some wily ways of mucking up my life. Symptoms and side-effects of a wonky thyroid are far-reaching, and just when I think I have them under control (or am at least resigned to them), another one makes its grand entrance.
Which brings us to the third challenge: carpal tunnel syndrome. For a couple of years I’ve had what I thought was neuropathy: tingling, numbness, swelling, and radiating pain in both hands especially first thing in the morning. It came to a head shortly after we moved into our new house last year, and my GP chalked it up to overuse of my hands and forearms from packing and unpacking endless boxes. A round of steroids and some anti-inflammatories should have done the trick, but instead there is a fresh new hell to endure.
If I employ the “coulda/woulda/shoulda” tactic for dealing with the three most-pressing physical challenges, I find myself regretting my decision to put off treatment even though I had met that $6,000 deductible last year. As I face the blank slate of a reset deductible, I wish I’d sucked it up and had the surgeries and procedures I need. Perhaps I would not be typing this very post with pins & needles fingers. Perhaps I would not be thinking about how stiff and sore my knee will be after sitting at my desk to compose a blog post. Perhaps I would not be chiding myself for having been tapped out by the end of 2014.
Cue the mental side of dealing with a physical issue. Because I did not have these problems surgically repaired, I must figure out how to change my thinking. For instance, I give myself a pep talk on the way to the gym. It goes something like this:
“Don’t think about what you used to be able to do, but focus on what you can still do.”
“Lots of people more able-bodied than you aren’t even trying.”
“Don’t look at what the other gym-rats are accomplishing; comparison is the thief of joy.”
“Even a shitty workout is better than no workout at all.”
I’m not very good at this part. I recall the words of my favorite yoga teacher: where my mind goes, so too goes my energy. I envision my faulty parts bathed in a warm glow of healing energy. But it’s work. A lot of work. I’m not a fan of listening to my body and accepting limitations; I much prefer to push through the pain. It’s a struggle to avoid falling into the “haven’t I suffered enough??” mentality, and it’s certainly not a great way to start a new year. But, instead of deciding that this old dog can’t learn a new trick, I will become a player (albeit not a starter) in this mental game. As the great Yogi Berra once said, “Ninety percent of this game is half mental.”