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.
To quote from Alexander, the hero of Judith Viorst’s timeless children’s book, today was a “terrible, horrible, no good, very bad day.”
Actually, truth be told, it’s been a terrible, horrible, no good very bad month. It’s been a death-by-a-million-paper-cuts month.
I didn’t wake up with gum in my hair or miss out on dessert at lunch like poor Alexander did. But it’s still been a THNGVB day.
This is dangerous territory. As a cancer “survivor” I should be grateful. I should be happy. I should be thankful to be alive and (more or less) in one piece.
To which I say, screw the “shoulds.”
Of course I’m grateful to have “survived” cancer (and of course I recognize that the “surviving” only hold true until the day in any given month in any given year that the cancer comes back. Which it does for some 40 percent of women diagnosed with early-stage, favorable breast cancer). I am happy that I’m not currently metastatic. I am thankful to be alive. None of this, however, cancels out the rest of the yucky stuff involved, and sometimes a girl’s gotta vent.
Today was the tipping point of my THNGVB month. A punctured tire this morning turned today’s to-do list into a scrap in the recycle bin. A cut on my leg from two weeks ago has become red, hot, painful, and pussed instead of healed. My attempts to slather it in Neosporin and cover it with a band-aid didn’t cut it (heh heh) so I’m now back in antibiotic hell. Cue the nausea, thrush, and terrible taste in my mouth, which join the dizziness, joint pain, neuropathy, fatigue, mental fog, muscle weakness, hot flashes, and sweating. Sheesh. I mean, sheesh.
I’ve been blaming this fresh hell on Aromasin, the latest aromatase inhibitor I’ve been taking to stave off a recurrence of my cancer and (theoretically) live a longer life. However, I’ve had the luxury of being off the dreaded Aromasin for a two-week period in advance of and following surgery. Yes, another surgery. Don’t be jealous. Perhaps it takes more than a two-week window to rid oneself of the nastiness Aromasin brings. Perhaps I’m just a whiner. Either way, I don’t feel good and I firmly believe that in some cases, the cure is worse than the disease.
Attempts to ameliorate any one of these symptoms are for naught. Taking a probiotic. Counting my blessings. Backing off of the intensity of my workouts. Viewing photos of baby donkeys and Golden Retriever puppies. Lighting a yummy-smelling candle. Drinking more water. Making an appointment with a neurologist. Doing a good deed for a friend in need. Nothing is helping. Nada. Nuttin.
In my most recent attempt to carve out a moment of not-hell, I read this quote in the current edition of Oprah’s magazine:
In our day-to-day lives, it’s easy to become overwhelmed with responsibilities and challenges. Having enough time to give to everybody who needs you and have any left for yourself is a constant struggle. But in the long run, designing space for you is the only way you can survive without burnout and resentment. There is no life without a spiritual life, and spirituality is like a muscle. It must be fueled. Fuel yourself with beauty, inspiration, music, laughter, nature, a hot soaking bath, silence. Whatever form it takes for you. Know this for sure: You have more to give when your own tank is full.
Dammit, Oprah! I’m trying. I’m trying to design space for me and to fuel myself. But what does one do when nothing is working?
I have a new Tamoxifen side-effect to add to my long list: T-rage.
T-rage joins an unpleasant cast of characters that feature starring roles in my daily existence. These characters take turns on center stage and compete for screen time. They jostle and nudge each other in their attempts to take over for real.
Who are these characters? The cast list is long, so bear with me. I’ll save the newest, T-rage, for last. These characters are all sponsored by my frenemy Tamoxifen. It’s my frenemy because it’s alternatively saves my life while also making me miserable. That life it is busy saving is increasingly becoming one not worth living.
Anxiety: because once you’ve faced down cancer, you need heightened worry and fretting, right?
Bone pain: an ache so constant it only changes with the inexplicable flares that come along. Pain so acute I swear I can see my bones under my skin, because the pain illuminates them. I’d say I’m like a skeleton, except I’m not because of the extra weight that literally weighs me down, thanks to my frenemy Tamoxifen. If only I were a joyful, dancing skeleton.
Joint pain: while I don’t envision the joints beneath my skin the way I do my bones, they hurt. A lot. Most of the time. And I don’t even want to think about Tamoxifen’s contribution to my bad knee.
Hot flashes: because living in Houston–land of eternal summer and omnipresent humidity–isn’t enough to keep one drenched in sweat.
Sweat, sweat, and more sweat. Like the clown car at the circus, the sweat just keeps coming.
Dry skin: Why can’t all that sweat moisturize?
Brown spots on my face: I’m aging at a quick clip. Not pretty on a banana, not pretty on me.
Thinning hair: To go along with the dry skin and brown spots. Pretty. Real pretty.
Peach fuzz: there’s hair where I don’t want it while that on my head is withering. By then end of my proposed 10-year course of this damn drug, I’ll have a full beard and a bald head.
Mental fogginess: huh? What was I going to say?
Sleeplessness: because the previous characters don’t wreak enough havoc, now there’s no escaping them.
Fatigue. Crushing fatigue. As in, each of my limbs feels as if it weighs 50 pounds. As in, it’s a Herculean effort to get off the couch. As in, I’m not rested after a full night’s sleep. As in, this bites.
Irritability. Major irritability. Sometimes I can barely stand myself. It is ugly.
And, introducing irritability’s next-of-kin: T-rage.
You’re heard of ‘roid rage and road rage, and now T-rage. It’s similar to the other rages, in which something — in this case, Tamoxifen — causes a major-league reaction to a minor provocation. The sight of a Toyota Camry ahead of me in traffic (I hate Camrys). The guy conducting a shouting match on his cell phone in the middle of the grocery store (does anyone want to hear him squabbling with the unfortunate soul on the other end of that conversation?). The lady in the grocery store who leaves her cart in the middle of the aisle then gives me a go-to-hell look when I say “excuse me.” The asshat in the middle of the parking lot waiting for the person loading their groceries to pull out rather than picking another space. There are a hundred parking spots, but he’s gotta have that one. It’s a wonder I got out of the store without someone filing assault charges.
The T-rage sends me into certifiable-crazy mode in an instant. It’s not enough to just get around the Camry in traffic; I want to ram it. I’m not satisfied with shooting the cell-phone combatant a dirty look; I want to yank the phone out of his hand and shove it so far up an orifice he’d need it surgically removed. I’m not at all content to say “excuse me” to the inconsiderate grocery shopper in a shitty tone; I want to push her down and run over her repeatedly with her ill-placed cart. I don’t want to just shake my head at the fool holding up traffic in the parking lot while he waits for that close spot; I want to hurl my gallon of organic milk through his windshield.
Don’t even get me started on the moron in the mini van at middle-school pick-up yesterday who thinks the “No parking” sign doesn’t apply to her. No longer content to roll down my window and politely (or rudely) ask her not to park there, with T-rage, I want to do mean and horrible things to her.
I’ve got the T-rage. Real bad.
This. Is. Not. Good.
I know full good and well that I would not do well in prison. I’m much too fond of my own personal space, unlimited moisturizer, and fresh produce. Oh, and alcohol. Some inmates want a cake with a file or a shiv baked inside; I’d need my visitors to smuggle in booze.
Since prison is not a viable option, I need to get a grip on this T-rage. I need to figure out how to get through my day without murderous thoughts about the neighbors who can’t be bothered to pick up the crap-tastic freebie newspapers littering their driveways. The sight of so many neglected second-rate publications should not incite such violence. And yet, it does.
There are tips for dealing with road rage, and I’d suggest the best way to avoid ‘roid rage is to simply not take steroids. But I’ve not found any helpful tips on avoiding the T-rage. I’m gonna have to look for a 12-step program. Right after I punch someone.
The American Psychological Association knows how to throw a party. Well, a blog party anyway. The APA is sponsoring a Mental Health Blog Party today, and I’m happy to participate. Many thanks to Marie at JBBC for spreading the word about the MHBP. If I didn’t know better, I might think it’s an acronym party, as well.
The topic of mental health is scary, uncomfortable, and unpleasant for a lot of people. Add cancer to the discomfort of mental health and watch people run screaming from the room or back away slowly, never breaking eye contact. Perhaps that’s part of why the APA is throwing the Mental Health Blog Party; to de-stigmatize mental health issues the way pioneers such as former First Lady Betty Ford and Dr Susan Love have taken the shame out of breast cancer.
Yesterday I got a call from the nurse case manager provided to me by our health insurance company. We’ve had this particular health insurance, United Health Care, since September, but the NCM just got around to calling me. When I was first diagnosed, and under another insurance company, the NCM was fantastic. She was a great resource not only for insurance issues but also knew the medical side of my problem too. She went to bat for me and got the insurance company to pay for my Oncotype DX test, which costs a fortune but is instrumental in making a decision about treatment options.
Anyhoo, I was surprised to get a call from the United Health Care NCM out of the blue yesterday. I suppose she — or someone in her group — just noticed my unusually thick file, chock full of cancer calamities and infection ills and figured I warranted a phone.
We went through the usual laundry list of details: date of diagnosis, surgeries (yes, plural surgeries), and treatment status. Then there was the recitation of the everyday meds post-cancer: tamoxifen to prevent recurrence, Effexor for menopause symptoms, levothyroxine for sluggish thyroid, and Ambien to help my worried mind shut down and get some sleep. Oh, and don’t forget the glucosamine for my rotten joints (thanks, tamoxifen!), Ferrex iron boost for anemia (thanks, mycobacterium!), and calcium for osteopenia (thanks, menopause!). I’ve recently added an Omega fatty acids supplement too to help jump-start my addled brain (thanks, PTSD).
Although I clearly stated that the Effexor is to help manage the hot flashes, night sweats, and moodiness of menopause, the NCM asked me if it’s helping me manage the depression brought on by my cancer diagnosis.
I reiterated that I’m not taking it for depression but to get some much-needed relief from the atrocities of chemically induced menopause. I don’t think she believed one word I said. Either that or she’s hard of hearing because she again asked how I’m coping with the depression and reminded me that it’s ok and even expected to feel sad after being faced with cancer.
I finally told her in an exasperated voice that I don’t suffer from depression, and if I did, I’d have no qualms whatsoever about taking an antidepressant. To me, depression is no different from any other medical condition that requires daily medication. Where’s the stigma surrounding statins for high cholesterol? Or beta blockers for high blood pressure? Or insulin for diabetes? Why should the stigma just be attached to depression? That sweet woman got more than an earful from me. I still think she doesn’t believe me about the depression thing, and she ended our phone call by reminding me that my health insurance plan covers 8 free counseling sessions. Just in case I need some help with that depression.
I understand completely why cancer patients and cancer survivors may be prone to depression. The list is long, very long, of reasons for cancer patients and survivors to be depressed, sad, out of sorts, unmotivated, fatigued, unable to concentrate, easily confused, guilty, hopeless, worried, unable to sleep and full of chronic aches & pains.
Webmd has an entire online community devoted to cancer. From the web site:
“Depression is a comorbid disabling syndrome that affects approximately 15% to 25% of cancer patients. Depression is believed to affect men and women with cancer equally, and gender-related differences in prevalence and severity have not been adequately evaluated. Individuals and families who face a diagnosis of cancer will experience varying levels of stress and emotional upset. Depression in patients with cancer not only affects the patients themselves but also has a major negative impact on their families. A survey in England of women with breast cancer showed that among several factors, depression was the strongest predictor of emotional and behavioral problems in their children. Fear of death, disruption of life plans, changes in body image and self-esteem, changes in social role and lifestyle, and financial and legal concerns are significant issues in the life of any person with cancer, yet serious depression or anxiety is not experienced by everyone who is diagnosed with cancer.”
“It’s harder to write about the weight of depression than it is to write about prostate cancer and its physical indignities. Cancer is clear biological bad luck. But depression, no matter how much we know about it, makes part of me feel as if it’s somehow my fault, that I’m guilty of something that I can’t quite articulate.”
“Partly, I think, I’m grieving for the person I was before I learned I had cancer. Mortality is no longer abstract, and a certain innocence has been lost. And while the physical trauma is past, the stress lingers and brings with it days washed in fine shades of gray. In the same way that radiation has a half-life, stress does, too. We all ache to be the heroes of our own tales, right? Well, I’m not feeling too heroic these days. Cancer pushes lots of difficult buttons. It lays bare our basic vulnerability and underlines the uncertainty of this life. And prostate cancer attacks our culture’s ideal of manhood. The steely-eyed Marlboro Man isn’t expected to worry about incontinence and erectile dysfunction. Cancer feels bleaker than other diseases. Even though my health keeps improving, and there’s a good chance that I’m cancer free, I still feel stalked, as if the cancer were perched on my shoulder like some unrepentant imp.”
Did y’all hear about this? A Trenton, New Jersey CVS pharmacy accidentally dispensed tamoxifenn instead of pediatric fluoride pills.
I love CVS for the generous donations they made to Extreme Home Makeover, the feel-good show that used to be on TV. I searched to find a source to tell me how much CVS donated via the show over the years, but my patience wore off before I could find an answer. Suffice to say it’s a lot.
When I read about the drug mix-up, I cringed. The estimate is that as many as 50 kids received Tamoxifen instead of their chewable fluoride pills between December 2010 and February of this year. CVS hopes that any one of those 50 kids who tried to chew a tamoxifen pill instead of the usual fluoride pill would notice that something was different. Daniel Hussar, who teaches at the Philadelphia College of Pharmacy, was quoted as saying that because tamoxifen is meant to be swallowed, no effort is made to make it taste good, as is the case with chewable fluoride. He says a child who tried to chew tamoxifen would likely “want to spit it out or tell his parents it tastes bad.”
If they didn’t notice the taste, I wonder if they noticed the side effects. I pity the parent who has to deal with a moody, hot-flashing kid.
Because tamoxifen’s job is to block estrogen and prevent breast-cancer recurrences, it can monkey with one’s hormones. I’ve written about this very topic. More than once. I feel pretty qualified to complain about the side effects of tamoxifen, even though I know it’s an integral player in the recurrence-prevention game. I know well that this drug is my best shot for keeping that infernal cancer beast from showing its ugly mug around here again. The National Cancer Institute says explains it, “As adjuvant therapy (treatment given after the primary treatment to increase the chances of a cure), tamoxifen helps prevent the original breast cancer from returning and also helps prevent the development of new cancers in the other breast. As treatment for metastatic breast cancer, the drug slows or stops the growth of cancer cells that are present in the body.” Great right? Yes. Definitely. But, as we all know, there is no free lunch, and tamoxifen comes with some heavy side effects.
At the risk of sounding like one of those annoying commercials that lists every side effect under the sun, here goes: increased chance of blood clots, increased risk of strokes, development of uterine cancer, and cataracts. But wait, there’s more: menopause-like symptoms such as mood swings, hot flashes, joint pain, and leg cramps. Not listed is the accelerated aging characterized by dry skin, loss of collagen, brown spots (aka “age spots”), and thinning hair. Because losing my rack isn’t enough, I also got thrown into chemically-induced menopause and became a brittle old woman decades before my time.
Not that I’m complaining.
Instead, I’m looking on the bright side: when I pop the little white pill every morning, I know exactly what I’m getting. No surprises. No mistaking a chewable fluoride pill for a powerful anti-cancer weapon.
“Pride goeth before destruction, and haughtiness before a fall.”
Proverbs 16:18. Heard it a million times, because I’m a prideful person. Ask any of my tennis buddies about me being at the net when a heavy hitter comes in fast to deal with a high, slow, floating ball. Common sense dictates that the player at the net back up, lest she get pegged at close range. I, however, prefer to stand my ground knowing full well that I’m a sitting duck. Seems too much like an admission of defeat to back up, and I’d rather get pegged than retreat. It’s stupid, I know. It’s dangerous, for sure. And yet, once dug in, I stay. Too proud to retreat. Somehow in my prideful, haughty brain, it makes more sense to get hit–hard and at close-range–than to back off.
Pride equals pain sometimes, but that’s the way I’m wired.
I was mighty prideful, and perhaps a bit haughty, about the fact that everyone in my house has been sick–two members of my family got the creeping crud twice–yet I remained healthy. Escaping unscathed from the bevy of germs that invaded my house for several weeks wasn’t easy, but I did it. And I was a bit smug about it, so I guess I should have been ready for the fall.
I hate being dependent on others.
I hate resting when I could be doing. Something. Anything.
I really hate having my daily routine up-ended.
The tennis season has just started up again, and I’ve been making some serious progress in the gym lately. No to mention the colossal clean-up that’s been going on at home; closets organized, pantry emptied out & re-stocked, piles of debris chucked onto the recycling pile. This is no time for me to be sidelined.
Sore throat, fever, congestion, cough, and fatigue be gone! I’m done with you.
Tomorrow will be a better day.