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.
The rain has been relentless in my part of the world. H-town has made national news this week, with photos of our soggy city and Mother Nature’s destruction relaying the misery.
Here’s a shot comparing the same freeway before and after our epic rainfall.
And another before-and-after shot in the Meyerland area (although the way the photographer arranged the photos, it’s an after-and-before shot).
This photo was taken Tuesday morning near the Museum District. MacGregor is the street we exit to go to the Houston Zoo. It’s crazy weird seeing such familiar sites under so much water. The state climatologist (yes, that is a real job) estimates that Texas has received more than 7.5 inches of rain in May.
We haven’t seen rain like this since Hurricane Ike, which hit my city in 2008. In fact, the Houston Weather Service has not issued a flash flood emergency since Ike. Until this week. We have had rain in biblical proportions. Some areas of Houston were drenched with 11 inches of rain Monday night and Tuesday morning. One of our local weather nerds equated that rainfall to 162 billions of gallons of water.
In the suburb I call home, the aftermath of the storm was less dramatic. Thankfully. Our house backs up to a bayou that has a small stream running through it; normally we can’t see the water out our back windows. This is what it looks like on a normal day (sometimes you can even catch a glimpse of sweet Pedey, sunbathing or napping).
It was hard to tell just how deep the water was, and I had a fleeting thought about crossing that little road to get a photo of the other side of the bayou. A very fleeting thought.Several steps in, the water was halfway up my boots.
A few more steps, and the water was coming in my boots.
My beloved bayou was flooded. I wondered what this meant for the wildlife we love to observe just beyond our back gate. No sooner did I wonder when I heard a splash and saw a young deer swimming across the bayou. I watched to make sure she got across safely and made a mental note to throw some kale and dried corn over the fence for her. The lush foliage and wild berries she normally nibbles on were washed out.
I just read Angelina Jolie Pitt’s op-ed in The New York Times about her second preventative surgery: to remove her fallopian tubes and ovaries. Just as she did with her prophylactic bilateral mastectomy two years ago, Jolie Pitt writes articulately and openly about her laparoscopic bilateral salpingo-oophorectomy, using imagery and opinions that those of us who have walked in her shoes immediately understand.
She writes, “The beautiful thing about such moments in life is that there is so much clarity. You know what you live for and what matters. It is polarizing, and it is peaceful.”
So much clarity. Amidst untold chaos and unimaginable confusion, there is clarity.
She recounts her consultation with the GYN surgeon, who had also treated her mother: “I last saw her [the surgeon] the day my mother passed away, and she teared up when she saw me: ‘You look just like her.’ I broke down. But we smiled at each other and agreed we were there to deal with any problem, so ‘let’s get on with it.’”
I had a similar encounter with someone who cared for my own sweet mama during her cancer treatment. The woman who was my mom’s radiation tech is now a nurse in my orthopedist’s office. I knew as soon as I saw her face that she was the kind practitioner who blasted pointed radiation into my mom’s beleaguered body five days a week for weeks on end. When I encountered her in the orthopedist’s office, I was thrown for a moment because she was out of context. But before long we realized who each other was, and she said the same thing to me that Jolie Pitt’s mom’s surgeon said to her: “You look just like her.”
Stupid fucking cancer.
When Jolie Pitt wrote about her mastectomy in May 2013 she cast the spotlight on the issue of femininity being defined by body parts. After her mastectomy she wrote: “I do not feel any less of a woman. I feel empowered that I made a strong choice that in no way diminishes my femininity.” With her latest surgery, Jolie Pitt casts the spotlight on another jarring and difficult result: forced menopause.
Becoming menopausal decades before its natural occurrence is unpleasant, to say the least. The physical and emotional ramifications of forced menopause suck. Really suck. There is no easing into the myriad effects, which can include hot flashes, night sweats, increased sweating, sleep disturbances, mood swings, urinary tract infections, sexual disfunction, memory loss, difficulty concentrating, back pain, joint stiffness, and fatigue. As if that’s not enough, throw in the accelerated aging: loss of elasticity in skin, lack of collagen, hair loss, brittle nails, diminished muscle tone, slower metabolism, and weight gain. Suck. At a time when many women are claiming the best version of themselves (“40 is the new 20!” “I’ve finally come into my own!” et al), early menopause creates instant grannies. Suck. If anyone can shed light on the ugly truths of forced menopause, my money is on Angelina. Yes, she has unlimited financial means and resources unavailable to the average cancerchick, but she also has a platform for educating the masses and she’s gonna use it. Hooray!
At the time of this publishing, there were 321 comments on her story; by the end of the day that number will have climbed. The handful of comments that I scanned were positive, but there are some who chastise her for her choices. I’m always amazed at how ugly people can be with the anonymity that our online world provides. How nice it would be if those cowardly, overly opinionated haters could really digest Jolie Pitt’s reasoning and respect her choice. How nice it would be if they would re-read the last sentence in this segment of her latest essay:
“I did not do this solely because I carry the BRCA1 gene mutation, and I want other women to hear this. A positive BRCA test does not mean a leap to surgery. I have spoken to many doctors, surgeons and naturopaths. There are other options. There is more than one way to deal with any health issue. The most important thing is to learn about the options and choose what is right for you personally.”
Choose what is right for you personally.
What works for you may not be the same thing that works for me, or for your neighbor or your cousin or the woman who works at your favorite Hallmark store. Cancer, like any disease, is an immensely personal issue, and any and all decisions resulting from a diagnosis should be personal.
This is a real-life tale of the fall-out from the FDA restricting the use of hydrocodone, better known by the brand names Vicodin, Lortab and Norco. Notices like this hang from cabinets in every doctor’s office I have visited.
I am not a junkie. I am not an abuser of painkillers. prescription or otherwise. I have no desire to self-medicate with painkillers. That’s what wine is for. Duh.
Millions of people do self-medicate with Vicodin, though, and last Fall the U.S. government stepped in to try to dethrone Vicodin from its perch as most prescribed medication in the entire country. Vicodin is the Miss America of painkillers. In 2010, doctors in the United States wrote 131 million prescriptions for Vicodin. First runner-up in the Miss America of Prescription drugs was Zocor, a statin that trailed Vicodin by 36 million sripts.
So, too many people asked for Vicodin, too many doctors complied, and an epidemic of misuse occurred in which drug-overdose deaths claimed more lives than car crashes. In drug-overdose deaths, an estimated three-fourths involve painkillers, according to federal statistics. So the government stepped in and reclassified hydrocodone as a Schedule II drug, alongside the most powerful drugs, like morphine and oxycodone. With that reclassification, it became damn near impossible to get a prescription for Vicodin. No longer could a doctor call in a prescription for Vicodin. No longer can a physician’s assistant prescribe Vicodin. No longer can Vicodin just sit on the shelf next to all the other drugs; now it must be locked up in a vault.
The sticky wicket with drugs like hydrocodone is that it is one of the most effective drugs against pain, but it is also has the potential to be the most addictive of the prescription drugs. No doubt the misuse of painkillers like Vicodin is a problem and can ruin lives. However, pain has that same potential. Whether chronic or situational after a surgery, pain can ruin your life.
I know, because I live it.
I have chronic pain, from a misaligned and thrice-operated-upon knee as well as from carpal tunnel syndrome. Every single day I have pain. Not just a little bit, either. And not the kind that is alleviated by OTC meds or Tylenol 3. But the kind that not only affects my everyday life but has also changed who I am. Studies show distinct links between pain and anxiety, and that chronic pain destroys our physiological ability to experience joy. This I know to be true. I am at war with my body, and I am losing.
When the pain from my carpal tunnel became so bad that I could hardly use my hands and fingers, especially first thing in the morning, and when the pain awakened me more than one time every night, I knew I had to schedule surgery. I’ve been putting off the CTS surgery for a while because, quite frankly, I am so done with surgeries. I am so over surgeries. I can’t even. Yet I must.
I got several recommendations for hand surgeons and chose Dr P, who did CTS surgery on one of my fellow gym-rat friends. She was back in the gym, albeit at a reduced pace, less than a week after surgery. That reassured me and got me into the exam room for my consultation with Dr P.
Along with my consult, I got a nasty surprise: not only do I have carpal tunnel syndrome, I also have cubital tunnel syndrome, and it too requires surgery.
Yeah, I’m an overachiever that way.
I’d never even heard of this ghastly cubital tunnel syndrome before, and am guessing you haven’t either (it is the second-most common nerve entrapment in the entire human body, but is very often misdiagnosed). It’s basically nerve entrapment of the ulnar nerve, which runs from the side of the neck to the fingertips. The ulnar nerve passes through the cubital tunnel behind the inside of the elbow and runs all the way down the forearm and into the hand. This nerve provides feeling to the pinky and ring fingers as well as working the muscle that allows us to pull our thumb into the palm of our hand.
There are two ways to fix cubital tunnel syndrome, and they both suck. In medial epicondyltetomy, the bony bump of the inner elbow is removed to allow the ulnar nerve to slide through the cubital tunnel (translation: the surgeon shaves part of your elbow off in order to re-route the ulnar nerve). That seemed pretty horrifying to me, yet the other method is even worse. In ulnar nerve transposition, the surgeon creates a brand-new tunnel for the ulnar nerve by carving a trench in the flexor muscles of the forearm and relocating the ulnar nerve from the cubital tunnel into the newly carved tunnel.
In my case, Dr P won’t know which procedure he will need to do until he gets in there. His plan is to make a 6-inch incision along the inner part of my arm between my shoulder and elbow. Then he’ll have a little look-see and decide which form of torture best suits my jacked-up body.
So, just to recap: I’ll be having not one but two surgical procedures: one to correct the carpal tunnel syndrome, and the other to reroute my errant ulnar nerve. Both surgeries involve the usual cutting, splaying, digging in, and stitching up flesh (and perhaps bone, too). Both surgeries involve jacking with nerves (ouch). The cubital tunnel surgery involves cutting through muscle when the ulnar nerve transposition is called upon to solve the problem. Both methods of correcting the cubital tunnel issue involve physical therapy (in the case of ulnar nerve transposition, PT can last upwards of four months).
My experience with surgeries that involve nerves, bones, and muscle is that the result is pain. Lots of pain. Which brings us back to the government reclassifying hydrocodone.
In the course of discussing the two surgical procedures with Dr P, I asked about pain management. I was reeling from the cubital tunnel diagnosis and the nasty surgery it entails, as well as the hard recovery involved and was totally unprepared to hear him say that his standard of care for pain control — after cutting nerves and potentially shaving off bone and carving through muscles — is Tylenol 3.
Let me repeat: cutting nerves, shaving bone, carving through muscle. A 6-inch incision. Tylenol 3.
Oh, hell no.
I gave him a brief synopsis of all my previous surgeries, which have involved cutting nerves, shaving bone, and carving through muscle, and informed him that Tylenol 3 doesn’t do shit for that kind of pain. He countered with an offer of a nerve block during surgery, to provide short-term pain relief. I shook my head in disbelief at the idea of a nerve block making more sense than a prescription for a small number of pills to be used at my discretion. We had reached an impasse.
He suggested I consult a pain-management doctor to discuss a stronger form of pain-killer. Again, I shook my head at the idea that involving another doctor — and adding another layer of expense, to me and my insurance company — made more sense than writing a prescription for a handful of pills.
Guess what? I happen to have a pain-management doctor, because that’s how we roll when we have chronic pain. You might think that a pain-management doctor could help a patient manage pain. But when I called my pain-management doctor’s office to request a stronger form of post-surgery pain-killer, his receptionist’s response was, and I quote, “I can tell you that’s not going to happen.”
I suspect what she meant was that because I has not seen him recently I needed a referral in order to make an appointment. I have learned the hard way how to read between such lines. So I called Dr P’s assistant and reported back. She called the pain-management doc with a referral and was told that I could come see the pain-management doc on March 16 — which is 10 days after my surgery.
I’m still wondering how that would help me.
Going in for surgery is stressful, on many levels. Worrying about pain control afterward should not be a part of that mix.
Here’s the bottom line about the lock-down on hydrocodone: there is no longer any difference between a patient who seeks a prescription for a short-term course after surgery/injury and those looking for a fix to get high. The new policy is reductive and buys into the punishing adage of a few bad apples spoiling the bunch. For patients like me, who want the peace of mind that comes with knowing adequate pain relief is available, the lock-down creates shame.
Having to beg for effective, short-term pain relief after a legitimately painful surgery creates shame.
As if that’s not bad enough, many pharmacy groups, pain consultants, palliative care specialists, and oncology specialists believe that the lock-down on hydrocodone won’t work. These guys realize that the lock-down will likely lead to different, possibly more devastating, problems. Those who seek hydrocodone for recreational use or escapism are going to find it, regardless of the reclassification. But those who need it situationally are shit out of luck. And that’s really shameful.