Angelina’s Diary of a Surgery

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.

 

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A solution on paper only

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. IMG_3782

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.