#nofilter

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.

All these years later,  just being in that same hospital brought it all back. It took a few moments to snap out of it and load my shattered self back into the elevator to retrace my steps into the medical plaza and away from the hospital. Why was I catapulted back to that unpleasant and unwelcome era in this long, ugly cancer “journey?” I’ve no idea. No matter, I suppose, as the take-away is that after many hours and a full sleep later, I’m still reeling.
Arriving in the neurologist’s office, I dutifully handed over my new patient paperwork and was briskly admitted into an exam room. I read most of this article in Men’s Journal about when to say no to your doctor. Ironic. When Dr E walked into the room, I joked about that irony and was met with stone-faced silence. Perhaps the newest doc in my tribe doesn’t find me, or that article, very funny. I briefly considered ripping out the article, to reread it later and decide if it was indeed ironic, but then remembered I brought a small purse and would have to fold the ripped-out article. Not worth it.
Within mere minutes of meeting me, Dr E proclaimed that I have no filter (’tis true, although I thought I was on my best behavior). So he doesn’t get my humor (wouldn’t be the first man to find himself in that situation), and I briefly and un-filteredly considered whether he could tell I was contemplating lifting his magazine article. No time to explore that, though, because he asked if I’ve been evaluated for ADD, then moved on to ask a series of pointed, unpleasant questions about the exact nature of and appearance of the neuropathy (e.g., when was the exact moment I recall experiencing neuropathy? How would I know — I have ADD.) He delved into my complicated, checkered medical history. After a thorough scouring of my history and timeline of current symptoms, he vowed to get to the bottom of my problem. He asked if I could submit to a series of tests in an hour and directed me to the coffee shop in the lobby. I filtered myself by just listening instead of telling him I know exactly where the coffee shop is and why I possess that knowledge. How ya like my filter now???
Forty-five minutes later, I returned to his office and was shown into a small, airless room and instructed on how to take a computerized test to gauge my attention span. I can’t recall the exact acronym of this “continuous performance tests” (hellooooo, I have ADD, remember??) but the point is a very simple response (in this case, clicking a button) is required after a simple stimulus (in this case, a rapid-fire series of black rectangles appeared on the computer screen in random order. Each rectangle had a small white square in it; sometimes the white square appeared in the top of the black rectangle, and other times it appeared in the bottom of the black square. Each time it appeared in the top, I clicked the button). This went on for 20 minutes. For 20 minutes. For 20 interminable minutes, my eyes watered and blurred. My thumb clicked the button. I slumped and straightened in the seat. I wrote and re-wrote a blog post, then promptly forgot what it contained.
squirrelI sweated and cursed the small, airless room. I wondered how much time had elapsed. I wondered if clicking that button was contributing to the neuropathy in my hands. I rebelled against the test directions to avoid looking for a pattern and guessing when to click the button. I composed a grocery list. I fashioned a crude fan from a piece of paper to stir the hot, stale air, not once taking my eyes off that blasted screen. I thought about what to serve my kids for dinner that constituted a nutritious meal yet required little or no work from me. I vowed to ace that test, but grew bored of and distracted from it post haste. Hence the no filter.
My 20-minute penance done, I entered the next level of hell: the shock test, aka the nerve conduction velocity test. Yuk. I’ve endured some pretty yukky medical procedures in my day, but this one was yukky in its own special, unique way. Long story short, the nerves must be toasty warm to be shocked and measured, so I had to get under an electric blanket while wearing a paper gown. I had to keep my feet covered, which is one of my versions of personal hell, and I suppose Dr E would categorize that revelation as further evidence of me having no filter. Fine, that’s fine. I don’t like my feet covered. And I don’t like being under an electric blanket preparing to have my nerves shocked. Whatev. Personally, I believe filters are way, way overrated.
After I told the the nurse that putting a menopausal woman under an electric blanket is seriously not cool, she hooked up electrodes to my fingers, palm, wrist, forearm, bicep, and neck and shocked me repeatedly. Think of hitting your “funny bone” again and again while sweating under an electric blanket with a moist paper gown stuck to you and your feet protesting the claustrophobic conditions, and you are there. You get the gist. Except it’s not just your “funny bone” that smarts from the shock; it’s more of a full-body twitch. When the larger nerves were to be shocked, the nurse instructed me to take a deep breath and let it out slowly. Nothing good ever follows being told to take a deep breath and let it out slowly. Nothing. I defy anyone to find anything good. With those deep breaths, I wanted to be like this:

googleimages.com

googleimages.com

But instead, I was like this (pardon the profanity; it’s fitting and again, another example of me having no filter):

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googleimages.com

Shock after shock. And I submitted to this test willingly and within my right mind??? One or two shocks is doable. But nearly an hour of it, on both sides of the body? Filter this, people. I kept thinking, at least there are no needles involved.
Once the shocking was over, the nurse said to relax and wait for the doctor, but please stay covered up because he had one more test to administer. I honestly thought about shucking the blanket off, peeling the sodden paper gown from my stanky body, and getting the hell outta there before Dr E had a chance to reappear. However, I was a bit curious about how I did on that computer test, so I stuck around.
Remember the foolish, filterless goofball who thought, at least there are no needles involved? Guess who ended up with a needle stuck in a nerve ranging from fingertip to neck on both sides of her body? Yep. At that point, I was exhausted, my eyes hurt, my body pinged from having been shocked, and my dignity had long left the building.
Dr E pronounced me to have been through the proverbial wringer, both that day and for the last several years. He described the extensive nerve damage I have to both wrists, as well as a lingering muscular issue in my right shoulder. He gave me solutions, both pharmaceutical and holistic. He talked a lot about genetics and its role in our ongoing health, and asked me to come back in two weeks. I agreed, as long as there were no shocks involved. I wanted to ask him to commit to that in writing, via a binding contract, but was trying to use my filter.

Blog Party, APA style

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.”

While webmd quotes 15 percent to 25 percent of cancer patients suffering from depression, and the Lancet says it’s more like 16 percent, who knows if either number is anywhere near correct because so many people are ashamed to admit to depression. The fact that more cancer patients and cancer survivors aren’t depressed is what surprises me.
New York Times columnist Dana Jennings blogs about his bout with advanced prostate cancer, and speaks of being “ambushed by depression” after enduring the grueling treatments and being back on the road to good health. He quotes the 25 percent as well, and compares that to 7 percent of the general population suffering from depression. He refers to it as less about sadness and more about feeling oppressed “as if I were trapped, wrapped up in some thick fog coming in off the North Atlantic.” Jennings goes on to admit that writing about prostate cancer and all its embarrassing aftereffects is easier than admitting he’s depressed.

“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.”

That is staggering.
Because Jennings is a professional writer, he conveys much more eloquently than I the impact of depression after cancer. I’ll close with this, and will ponder his words as I attend the APA’s Mental Health Blog Party.

“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.”


That hospital smell

That hospital smell. Yuk.

It’s been a while since I’ve smelled that familiar and powerful smell. Yet as soon as I walked through the sliding glass doors for my CT scan, the smell of sickness, helplessness, confusion, fear, uncertainty, and anxiety flooded my senses. I’m back at the hospital for a scan of my chest and abdomen, to peer into the inner workings of this body of mine to determine if that wily cancer beast is setting up shop again.

As much as I hate being here, smelling that hospital smell, I’m strangely comfortable here. Although I haven’t had my all-important cup of coffee or one bite of breakfast, and although this is the last thing I want to be doing this morning, I’m not too grumpy. I know exactly where to park to get me closest to the Outpatient Imaging area. I proceed effortlessly to the hospital registration desk, the payment cubicle, and the Imaging reception area. The ubiquitous white ID bracelet circles my wrist like an old friend slipping her hand into mine. I recognize some familiar faces. There’s the kindly, grandfatherly volunteer who guides lost patients, so eager and proud in his dapper red vest and jaunty bow tie. There’s Christy the phlebotomist who remembered that I have young kids, and asked how they’re doing. There’s Mary the nurse who took pity on me when this cancer “journey” first began in May 2010 and I was in the imaging area all day for tests. She took pity on me and presented Amy and me with a pink Astros jersey, just in time for Mother’s Day. Another familiar face: Lily, who was my nurse in the OR during one of the many surgeries to try to contain the infection and clean up the swath of destruction it left in its wake. I first wrote about her a while back, and was tickled to see her smiling face today at Methodist. Lily is a breast cancer survivor herself, and she showed Amy and me the scars from her mastectomy years ago. Choosing to forego reconstruction, she put her cancer in the past and bore her horizontal scars with a quiet dignity and strength that often pops into my head. Imagine my delight when I see Lily ‘s face on a poster announcing her as the recipient of the 2011 Care Award. Well done, Lily, and well deserved.

Of the 12 others in Outpatient Imaging Waiting A, I’m the only one without an AARP membership. One woman is in her house coat, napping in her wheelchair. One is reading a large-print edition Agatha Christie novel. I’d be willing to bet I’m also the only one who packed kids’ lunches and juggled two different school drop-offs with my early morning appointment. Such is life as a “young” cancer patient.

I’m well prepared for my visit today, and look like a walking Apple ad with my iPhone, iPad, and iPod. The phone is the constant companion every mother of dependent children during school hours. The iPad is to distract and entertain, and the iPod is vital to block out the blare of the morning news show coming from the hanging TV. Today it’s Concerto for Violin and Orchestra No. 4 in D Major. Mozart reminds me to stay calm, don’t focus too much on the germ breeding-ground that is a hospital. Those of us who’ve contracted strange hard-to-treat infections after surgery tend to be on edge in the belly of the beast.

All set up with my personal electronic devices, I wait to be summoned to the back rooms of the imaging area. This is not my first rodeo, so I know what to expect: I’ll get an IV inserted in the crook of my arm (always a pleasure since my veins are so tapped out and reclusive after all this mess), then I’ll have to drink two big cups of gross-tasting liquid contrast that somehow goes down my gullet and lights up my belly for the abdominal scan.

It is not tasty.

I had hoped the pink labels on the cups would provide a clue as to exactly what this concoction is, but alas, that hope was not to be recognized.

Both times I’ve had an abdominal scan and had to drink the non-tasty drinks, I’ve been the only person in the entire waiting area to be served a beverage. The other patients waiting for their scans always stare, perhaps wondering why I’m so special as to get not one, but two special drinks.

I have one hour in which to drink this vile stuff, but I chug it down as fast as I can to get it over with. Christy, my phlebotomist/comedienne, quipped that if I had come after 3 pm she would have spiked my drinks for me.

After I’ve ingested all the non-tasty drinks and they’ve had time to light me up from the inside, I’m called back for my scan. Of course it’s freezing in the scan room, and because I’ve just chugged a 40 of cold nastiness, I’m a bit chilly. Christy makes my day by giving me a warmed blanket, and tells me to lie on the narrow “bed” of the CT scan machine. Once covered, she tells me to pull my jeans down to my knees — under the blanket — so the zipper and button don’t interfere with the scan. After drinking those awful drinks and enduring yet another needle stick, I’m not going to do anything to mess up this scan.

The machine starts clicking and whirring, and Christy and Lucas the technician tell me to raise my arms above my head, stretching them out as much as I can with the IV inserted. I do as I’m told, and Christy and Lucas leave the room. I’m all alone, except for the chugging of the machine and the computerized voice that tells me to breathe in, hold my breath, then breathe. This goes on for several cycles, then Christy comes back in to push the contrast dye into my IV for the chest CT scan. While this isn’t nearly as unpleasant as drinking the yucky drinks, it has the strange side effect of presenting a gross, warm sensation that is reminiscent of wetting your pants. Thankfully, this side effect was explained to me the first time I had the scan, so I didn’t panic.

It’s a weird feeling to actually feel something going into your veins. For this IV, I literally felt the needle entering my vein, and am happy to report that after all the needle sticks over the last 20 months, I’m not nearly as freaked out by this as I used to be. I don’t like it, but I don’t get sweaty palms over it anymore. I also felt the contrast push as it entered my vein, and I could feel it as it coursed through my bloodstream. Strange, unpleasant, and draining. I haven’t seen any clinical evidence to support this, but this whole experience wears me out, big time.

After the contrast spreads throughout its intended path, the computerized voice tells me to breathe in, hold, and breathe out a few more times, and then I’m done. By this time, my blanket is no longer toasty warm, and I’m more than ready to leave. Christy comes back in to remove my IV, and I’m all done. I feel a little woogity from all the junk that’s been injected into and ingested by my body and from the fact that it’s now getting close to lunchtime and I haven’t had a sip of coffee or a bite of breakfast. No matter, I’m done. I’m outta there, blowing off the stink of the hospital as fast as I can.

But here’s the rub, people: the fasting, the absence of coffee, the disruption of my morning routine, the sharp stab of the IV, the gross drinks, and the unpleasantness of the IV contrast are the easy part. Now, the waiting begins. Waiting to hear what shows up on those scans. Now that I’m well acquainted with my fellow cancer-chicks in the blogosphere, I know a lot more about breast cancer and recurrence than I used to. I’ve left the security of “we caught it early and think we got it all” for the real world of recurrence. Getting a glimpse into the harsh realities of metastatic breast cancer is a sobering experience. Through intrepid bloggers like the beloved Rachel and the eminently wise Susan and the witty Sarah (who had ovarian, not breast, cancer), I’ve learned first-hand that while being diagnosed with cancer, especially at a young-ish age, is scary, the really scary part is recurrence. We may think we’ve dodged a bullet or done our time or earned our freedom or whatever metaphor applies, but the truth is, it’s random and it’s scary. The periodic scans that make up the fabric of a cancer patient’s life are unnerving. There’s a delicate balance between wanting to be normal and being realistic. We hold our breath for the “all clear” while awaiting the blow that once again knocks the wind out of us and shatters our fragile peace.