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.”
What kind of moron schedules an appointment with a new specialist while recovering from yet another revision to breast reconstruction? Probably the same moron who thinks yet another revision is no big whoop and expects recovery to be swift. Will I never learn??? And the post-surgery antibiotics are wreaking their usual havoc and using black magic to cause me — a non-meat-eater and pet-pig owner — to crave ham. Ham. Of all things.
Dr E, the neurologist I saw yesterday for the mystery neuropathy I’ve been having in my hands, offices in the medical plaza adjoining the hospital to which I was admitted in early June 2010 for the nefarious post-mastectomy infection. A small PTSD episode may or may not have occurred inside that plaza at 8:30 a.m. yesterday, in which I stepped on to the wrong elevator en route to Dr E’s office and found myself not in the plaza but on the 9th floor of the hospital. I was transfixed and rooted in place, knowing I was not in the right spot but temporarily unable to grind the right gears and get out of there. I stood there, sweating profusely and shivering alarmingly near a giant window overlooking the freeway that leads from the hospital back to my home, in the Land of Sugar. The dregs of a rainy-day morning rush hour in Houston creeped along that freeway as I watched it, momentarily paralyzed with the searing memory of looking out that window on day 6 or 7 of that hellish hospitalization. My kids had just finished their second- and fifth-grade years of school; I had turned 41 just a week before that hellish hospitalization. Summer glistened ahead of us as I began a protracted and ugly battle against a rare and nasty infection following a cruel and unexpected cancer diagnosis. If someone had predicted that nearly 5 years later I would be paralyzed simply by being in that same hospital, I would have rolled my eyes and scoffed at that lame-0 idea. Suffice to say, no eye-rolling or scoffing occurred.
But instead, I was like this (pardon the profanity; it’s fitting and again, another example of me having no filter):
Today is my favorite day of the year. No, it’s not my birthday — it’s Global Champagne Day. Which might as well be my birthday. It’s one good thing — perhaps the only good thing — about the month of October, and I plan to celebrate.
Some people consider December 31st to be GCD; however, they are wrong. December 31st is New Year’s Eve, and while lots of champagne is consumed on that day every year, champagne does not share the limelight with the last day of the year, with the giant mirrored ball dropping, or any such nonsense. Champagne stands on its own. Sheesh, the fact that it’s Global Champagne Day proves that. It’s not even in the same league as National Shrimp Day or National Lost Sock day.
One of my friends at the gym heard me talking about GCD and asked — in all sincerity — if I made it up. As if I would fabricate a global movement just to have an excuse to drink champagne. As if I need a reason. Sheesh.
In honor of my favorite beverage on my favorite day of the year, here are some of my favorite quotes. I’d love to find bigger images of these quotes (all from googleimages.com) but am in too big of a hurry to pop a cork. Perhaps there is a way to edit the sizes right here on my computer screen, but again…time’s a wasting and I gotta get to pouring.
I like to drink water along with my champagne, so I can keep drinking the bubbles without fear of waking up with a headache. It’s called The Water Course, and anyone who has raised a glass with me knows I swear by that practice. A little tip from me to you. You’re welcome. Dance away, folks. Just don’t spill your champagne.
I have no clue who Cat Deeley is, but he or she is wise. Very wise.
Allow me to reiterate: champagne is just right for any occasion.
Preach on, Mark Twain. Preach on.
Oh, Winston Churchill! Why oh why didn’t anyone listen to you and institute a free champagne policy?
Lovely surprises lurk around every corner.
Sounds like a corny message from a fortune cookie, right? Certainly not what you expect from this little blog, which is typically full of snark. Allow me, if you will, to deviate from the gnashing of teeth, shaking of fists, and renting of garments usually contained within this site.
I had an appointment at the med center this morning to have my wonky thyroid checked out. I love the fact that I live in a city that is home to the world’s largest medical center and that world-class care is available to me.
Some fun facts about the med center:
- some 160,000 people visit TMC every day
- that equates to 7.2 million people a year (more than the populations of Los Angeles, San Francisco, and Houston combined)
- 106,000 people work at the med center
- 50,000 people are students at TMC
- TMC is made up of 21 different hospitals, 13 support organizations, 8 academic and research institutions, 6 nursing programs, 3 public health organizations, 3 medical schools, 2 universities, 2 pharmacy schools, and a dental school
- this beast of an institution is spread across nearly 1.5 square miles, and the 18 miles of public and private streets surrounding it would take the average person 6 hours to walk in its entirety
- the highest concentration of life-sciences professionals in the country live near and work at TMC
- TMC contains 7,000 patient beds; if stacked up, the beds would stretch 1.65 miles or 7 times the height of the Empire State Building
- a baby is delivered every 3 minutes at TMC
- a surgery is performed every 3 minutes
Indeed, everything is bigger in Texas.
Ok, so being the most kick-ass med center isn’t enough. TMC also throws up some pretty nice artwork–hence the lovely surprise. This morning while hoofing it from the endocrinologist’s office to the radiology department (a portion of the 1.5 square miles mentioned above) for an ultrasound, I passed some unusual artwork and stepped in for a closer look. Picasso said, “The purpose of art is washing the dust of our daily life off our souls,” and I was all for giving my soul a little spit-shine.
The minimalist approach of the first piece caught my eye, with its interesting color combination and deft brushwork. The combination of long, thin brushstrokes and fat, wide ones hold a lot of appeal.
The second piece is much busier and conveys a very different energy. The squiggles suggest movement and a fast pace, and the composition suggests the artist has a lot to say and says it quickly.
Painting number 3 is a bit more purposeful and controlled. The brushstrokes suggest a certain scale to me, and my first instinct is big. Or perhaps the suggestion of large size comes from the predominance of orange, which to me is a color that speaks out loud.
Back to a minimalist style for the fourth piece. The ratio of color to white space is quite different from the other pieces. While the pieces share a similar color scheme, they are vastly different.
The fifth painting could have been done by the same artist as painting number 4, with its similar colors and use of white space. The restraint that comes from the white space impresses me, as my instinct would be to cover a canvas with as much color as possible. Restraint has never come naturally to me.
Hmmmm. Very intriguing. I’m no art critic, but I like what I see, and I definitely like these pieces.
Would you believe that each piece was painted by a resident of the Houston Zoo?
The first piece was painted by Shanti, an Asian elephant who, according to her artist bio, is pretty serious about her craft. She dips her paintbrush into sand to give her paintings a mixed-media effect, and unlike the other elephant artists, she curls her trunk around the brush rather than holding it with the “finger” at the end of her trunk. She employs a keen concentration while painting and then likes to unwind by horsing around in the pool (she’s known for swimming in circles to make waves while the other members of her herd are in the pool).
The “busy” feel of painting number 2 can likely be attributed to its artist: an otter named Wednesday. This playful painter likes to walk through a puddle of paint and then step onto her canvas, hence the stippled look of the predominant green paint. She has been known to take a break from painting to go for a swim, then return to her canvas and let her wet feet create a true watercolor. Her motto: Will paint for fish.
The purposeful, controlled painting number 3 belongs to another Asian elephant named Methai. Before becoming a painter, Methai was a circus performer in Thailand. She’s a musician as well as an artist and can play several instruments, including the harmonica. Methai is the most prolific elephant artist at the zoo, and like Shanti, she too is all business when she paints: she is known to squint her eyes in concentration.
Painting number 4 was done by Harry, a White-faced Saki monkey. He’s a tree-dweller from the South American rainforest who mastered the art of painting quickly. He works fast, often completing his masterpieces in mere minutes, and tends to be pretty laid-back, although rumor has it he sometimes gets a bit frenetic about his work and ends up with paint all over him once he leaves the studio.
Credit for the last painting on exhibit at TMC goes to Cali the sea lion. The smart, playful sea lions are a crowd favorite at the Houston Zoo, and when Cali isn’t putting on a show or hunting for fishy treats, she’s churning out paintings like the one on display at TMC. She holds a paintbrush in her mouth to create her masterpieces, then hops back into the pool to frolic with her buddies.
Nietzsche said “The essence of all beautiful art, all great art, is gratitude.” After seeing this beautiful art, this great art, I’m grateful for Shanti, Wednesday, Mathai, Harry, and Cali.
Coming soon to a hospital or surgery center near you: drive-by doctoring.
It’s the latest trend in chicanery, in which some health-care workers (namely high-dollar specialists) insert themselves into a case in order to jack up their revenue.
It’s come to light thanks to this article in The New York Times. Here’s the long-story-short: “In an increasingly common practice that some medical experts call drive-by doctoring, assistants, consultants and other hospital employees are charging patients or their insurers hefty fees. They may be called in when the need for them is questionable. And patients usually do not realize they have been involved or are charging until the bill arrives.”
Here’s how it typically works: you have a medical problem, say breast cancer, that needs to be fixed. You see a specialist and/or a surgeon and do your research. You might even check with your health-insurance provider to ensure that your doctor and procedure are covered. Your doctor’s office also ascertains pre-approval and pre-certification for your surgery. You do your due diligence and assume all your ducks are in a row. Meanwhile. you are consumed with getting your life in order before your surgery date; in my case, in the 2 weeks between being diagnosed with stage II invasive breast cancer at the age of 40 and undergoing a bilateral mastectomy, I stocked the house with groceries and washed every item of clothing in the house; I arranged for rides to & from school and extracurricular activities for my two elementary-school-aged children; I submitted myself to a battery of tests and scans in a series of appointments that constituted a part-time job; I met with my kids’ teachers and guidance counselor to inform them of what was going on at home; I answered phone calls and emails from concerned friends and family and endeavored to keep my people informed of my situation; and I lay awake at night, despite my exhaustion, wondering what the hell my very uncertain future held in store for me.
I did not, however, think to ask if the army of health-care providers and the plethora of services my cancer required were all in-network. I was rather busy wrapping my head around my diagnosis and ensuring that I did everything I needed to do, for myself and for my family. The last thing on my mind was whether I’d get screwed by out-of-network providers charging 20 to 40 times the going rate.
Surprise! Here’s a huge bill for services you neither requested nor consented to, and not paying will ensure sleepless nights, stressful budgeting sessions, and harassment by collection agencies.
Luckily, I had great health insurance at the time I “waged war” on my cancer. Luckily, I happen to live in the epicenter of research and healthcare institutions; my city has some of the best medical schools and the best cancer-care facilities, which correlates to an abundance of first-class docs and hospitals. Luckily, I did not fall prey to drive-by doctoring during my cancer “journey,” but am nonetheless considering this a cautionary tale.
In the NYT article, a man named Peter Drier found himself recovering from back surgery and facing a $117,000 bill from an “assistant surgeon” he never met. Drier did his homework and researched his health-insurance coverage before his surgery, but still found himself a victim of drive-by doctoring.
Patients have their hands full before their surgeries, and some providers are looking to shore up revenue that is increasingly reduced by economics. It’s the perfect storm. Furthermore, hospitals that join an insurance network are not required to provide in-network doctors or services. New York has enacted legislation to protect consumers from drive-by doctoring; let’s hope other states follow. Until then, it’s buyer beware.
Misguided by emotion. Foolishly thinking one more surgery would do it. Clamoring for “the end.”
Although my intellectual side knew it could not be, my psychological side was hopeful that my recent hysterectomy would free me from adjuvant therapy for stupid, dumb breast cancer. My 3 1/2 years of Tamoxifen were bad. Really bad, and got progressively worse. I wrote about my Tamoxifen experience a time or two, including the always entertaining T-Rage. I was a happy girl after kicking Tamoxifen to the curb, but I did worry about the estrogen that was no longer being blocked by the drug, nasty as that drug was.
Removing my girl parts, which is a good thing in preventing breast cancer recurrence, would seem to be the answer, no? Yanking my ovaries meant my body could no longer produce estrogen, which could no longer feed any errant cancer cells that hung around after lopping off both breasts at the ripe old age of 40.
However, as those of us in Cancerland know, being pro-active and doing all you can isn’t enough. It’s never enough.
I’ve surrendered both breasts, both fallopian tubes, both ovaries, my uterus and my cervix in hopes of leaving Cancerland. Cumulatively, I’ve spent more than a month in a hospital bed, and suffered through 267 days of post-hospital antibiotic therapy for that nasty nosocomial infection I picked up along the way. And yet, it’s not enough.
It’s never enough.
While my nonexistent ovaries can no longer make estrogen, now I have to worry about estrogen from my adrenal glands. These two glands are located just above the kidneys in a space called the retroperitoneum and produce small amounts of estrogen. Even though I am now sans girl parts, I still have to think about the fact that my body is full of cells, both healthy ones and potentially cancerous ones, that contain estrogen receptors. These receptors can go haywire when they come in contact with estrogen, and can set off a shit storm called cancer recurrence. My defense against the potential shit storm is yet another drug.
Introducing Femara. It’s an aromatase inhibitor whose job is to find the enzyme that’s required to make estrogen and get rid of it. It’s similar to Tamoxifen in that it protects me from estrogen and has similar side effects: hot flashes, hair loss, joint/bone/muscle pain, tiredness, unusual sweating, nausea, diarrhea, dizziness, and trouble sleeping. It’s different from Tamoxifen in that it’s for postmenopausal gals and it doesn’t increase the risks of blood clots or uterine cancer. It does, however, erode bone density. With these drugs, it’s a give & take. Mostly take.
My cutie-pie oncologist wants me to start taking Femara. Because the 3 1/2 years of Tamoxifen hell weren’t enough. Because surrendering both breasts, ovaries, fallopian tubes, uterus, and cervix weren’t enough. It never ends.
The studies on Femara and recurrence show promise. The two main studies show that Femara reduces the risk of recurrence, increases the span of time before the cancer recurs, and reduces the risk of the cancer spreading to other parts of the body.
All good, right? Wouldn’t you want to do everything you could to reduce the risk of recurrence? Even if it meant taking yet another drug and enduring more side effects for years and years and years?
It’s never enough.