Does It Ever End?

Posted: December 5, 2016 | Author: | Filed under: breast cancer, cancer fatigue, kids | Tags: , , , , , , , , , , , , , , | 7 Comments

Over the weekend, my favorite girl asked me to help her with a project for her biology class. She’s a freshman in high school now. This is what she looked like at age 8 when I was diagnosed with cancer. I took this photo the day before my bilateral mastectomy. mandjeffreyThis is my favorite girl today. fullsizerender

I know, right??? How does that happen???

Anyhoo, back to the story: my favorite girl is doing a project for her biology class on a disease or disorder that has a chromosomal component. She chose breast cancer.

She needed the basic info of my cancer: stage, treatment, etc., as well as ancillary materials (photos and such) that tell “the story” of her subject’s experience with said disease or disorder. I pulled out my bulging “cancer catch-all” — my binder that holds all my paperwork, like pathology reports. That was easy because it’s all facts: this scan was conducted on this date and found this. Then she asked for the not-so-easy part: details on how my cancer affected me. While there are indeed facts involved with that part too, something else is involved as well, which is what makes it, for me, the not-so-easy part.

Feelings. The dreaded feels.

I don’t like feeling the feels associated with my cancer experience. (I refuse to refer to it as my cancer “journey” because to me that word implies an end point. With cancer, there doesn’t seem to be an end point. I don’t like it, so I’m not gonna use that word.)

Six years out, I don’t think about my cancer experience nearly as much as I used to (hence the loooooooong periods of radio silence from this blog). As with most calamities, time does smooth out the rough edges. But with my favorite girl asking me for all the gory details, that dark period of my life surrounded me, again.

When, exactly, do we “get over” this? At what point does the calamity of cancer lose its potent punch? I’d like an ETA on the return of peace and tranquility. Can someone please tell me when to expect an easing from the powers of the cancer calamity? Because I need to know that at some point, cancer will no longer upend my day like a sucker punch and leave me reeling, wondering why I feel as I’ve been run over by a truck.

That will happen, right?

Even though my cancer experience is no longer the petulant toddler whining for a pack of Skittles in the grocery-store checkout area, apparently that cancer still packs quite a punch. The simple act of flipping through my medical binder to locate information for my girl’s project sent me on a one-way trip through bad memories and scary places. I see myself from a distance, as if I’m watching myself on a screen. In the blink of an eye, I’m no longer a survivor whose scars are a badge of courage. Instead, I’m instantly transported back to that time. Those days. That period.

I hate that cancer has the ability to do this. I hate that cancer still controls me. Like a bad habit or a selfish lover, my cancer has a hold on me. Other people’s cancers have that power over me, too. Like my sweet mama’s cancer. That rat bastard smiles and licks its lips, knowing it is the puppet master and I am the puppet.

I should know better than to expect to be “done” with cancer. After all, I’ve been thinking about it and blogging about it for years. As I wrote early in 2011:

Another things I’ve learned on my “cancer journey” is that someone keeps moving the finish line. I’ve only been at this for 10 months, yet have seen my finish line recede, sidewind, and fade into the distance. It starts even before diagnosis, with the testing that’s done to determine if we do indeed have a problem. Get through those tests, which in my case were a mammogram, an ultrasound or two, and a couple of biopsies. Then there’s the actual diagnosis, and getting through that becomes an emotional obstacle course. Following the diagnosis are lots of research, soul-searching, and decisions. But even when those are through, the real work is only just beginning. After the big decisions come still more testing (MRI, CT scan, PET scan, blood work, another biopsy), and that’s just to get to the point of having surgery. Get through surgery, then through recovery, and just when I think I may be getting “there” I realize that even after recovery, I gotta learn about re-living, which is kinda different when “normal” has flown the coop and there’s a new status quo involved. You might think that finding the new normal would be the end, but guess what? now there’s the maintenance and screening. If you’re the kind of person who makes a list and takes the necessary steps to reach the conclusion, you’re screwed, because there is no end. I can’t even see the goalposts anymore.

I should know damn good and well that there is no end. So why do I keep looking for it?

 

#nofilter

Posted: November 6, 2014 | Author: | Filed under: Uncategorized | Tags: , , , , , , , , , | 10 Comments

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):

googleimages.com

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.

Trapping the jumping beans

Posted: November 26, 2012 | Author: | Filed under: breast cancer, cancer fatigue, literature | Tags: , , , , , , | 14 Comments

“Sometimes I have to let go and mother myself, kiss the hurts away. Tell myself that sometimes bad things just happen. But writing about it helps a lot, it scrapes it out of the dark corner, holds it up to the light and somehow heals the wound. It borders on miraculous.”

I have no idea who wrote these words. If any of y’all know, will you tell me? This quote spoke to me, though, at some point, because I wrote it down, and today as I cleared off my desk I found it. Scrawled on a scrap of paper and placed in my “I’ll get to this later” pile, the quote has lingered, waiting for me to get to it. How very patient.

I’m pretty sure I didn’t write it (although I wish I had). Perhaps it spoke to me because of the idea of having to mother myself. Being a motherless daughter, I don’t often think about mothering myself, and yet I do. Making myself go to bed when instead I want to stay up all night reading my current favorite book. Being diligent about pulling that load of shirts out of the dryer and hanging them up instead of letting them sit indefinitely in a wrinkled heap. Wiping up the spills on the stove top now, not later, before they’ve hardened into an indeterminate glob of laminated goo.

In the early days of navigating life without my sweet mama, I actively avoided any mothering that might come my way. That hole in my heart was too new, too raw to allow anyone else to even attempt to approximate any of the things my mom did. Seven years later, I still eschew any overt mothering. Somewhere along the way, though, I must have started mothering myself a bit. I certainly don’t hold out any hope that the hurts can really be kissed away, although I do tell myself often that bad things just happen. Telling myself that doesn’t help my innate desire to question, to wonder about the reason, or to pick things apart in a futile effort to figure them out. Sometimes it just is.

Writing about the things, whether the bad things or the confounding things, does help. Perhaps that’s the line that most spoke to me in the above quote. Perhaps that’s the reason I jotted the quote on a scrap of paper and put it in the pile on my desk. I’m a big believer in writing as healing, which I why I sit in front of my computer, keyboard clacking away as the words fill the screen. For me, just getting the words out of my head and the thoughts onto the screen is therapeutic.

Writing about the good stuff and the funny stuff is important, but writing about the bad stuff is even more so. Like the mothering I inevitably do for myself, writing about the bad stuff helps make it better. Somehow it purges the toxic stuff from my soul and helps filter the insomnia-inducing worries that blanket me after the lights go out and the house is quiet. No matter how much distance I try to put between myself and the cancer “experience,” those worries return. Sometimes it’s the fleeting thoughts before a routine oncology visit, and sometimes it’s a more concrete feeling. Sometimes it’s a visceral assault, like the smell of the hospital that fills my senses when I’m just visiting. Sometimes it’s a random trigger that takes me back to the heat of the battle. Regardless of the form or the impetus, the worries remain. Hence the need to write. Hence the need to read the stories of others who have walked this path. Ray Bradbury explained it perfectly:

“If you stuff yourself full of poems, essays, plays, stories, novels, films, comic strips, magazines, and music, you automatically explode every morning like Old Faithful. I have never had a dry spell in my life, mainly because I feed myself well, to the point of bursting. I wake early and hear my morning voices leaping around in my head like jumping beans. I get out of bed to trap them before they escape.”

Knowing that I can drown out the insomnia-inducing worries with the “morning voices” is sublime. It borders on miraculous.

 

Odd girl out at the oncology office

Posted: July 11, 2012 | Author: | Filed under: breast cancer | Tags: , , , , , , | 31 Comments

I’ve been on hiatus from blogging but rest assured, all is well. No real reason for the hiatus other than the fullness of life. Although I’ve not been wrapped up in the hurried pace of the school year, so far summertime finds me still going & blowing as usual. Less than three weeks until our annual vacation to Salisbury Beach, though, and I will slow down then. As the sage Zac Brown says, I’ll have my toes in the water, ass in the sand, not a worry in the world, a cold beer in my hand. Can’t wait.

Yesterday was my quarterly check-up with my cutie pie oncologist. My intrepid appointment companion Amy is currently living the good life seaside on the East Coast, so I had to go it alone. She strongly suggested I reschedule, lest she miss a visit with Dr Cutie, but alas, I carried on without her. She’ll have to wait until November to lay eyes on him, as I’ve graduated to three visits a year with him. That’s my reward for being two years out from the dreaded disease: fewer oncology appointments.

Despite one fewer chance a year to gaze upon Dr Cutie as he imparts his wisdom, this is a good thing because I found myself feeling guilty sitting in the waiting room. Of the four other patients waiting for the good doctor, I was the only one with hair. The others were not only bald but quite sickly looking (and a good 20 years older than me, as well). As I perched on a chair in my workout clothes, planning to hit it hard at the gym as soon as I got the requisite visit out of the way, I was filled with a sense of guilt over my good health.

I could feel the eyes of the other patients on me, and I imagined them wondering, as I would in their shoes, what a strapping gal with a full head of hair, color in her cheeks, and a spring in her step was doing at an oncologist’s office. Had the shoe been on the other foot, I would have assumed this picture of health was meeting someone there, or perhaps had found herself in the wrong office and had not yet realized the mistake.

My guilt was somewhat assuaged by the stark recollection that there was a time, not so long ago, when I was the sickly looking one, dragging myself from one appointment to the next, consumed with healing after a double mastectomy and overwhelmed by a post-surgical infection. I remember well the days of envying the “normal” people who walked with ease and were unburdened by the pressing concerns of cancer, treatment, and their ugly fallouts. Ditto for all the days (close to 30 days all told that one summer) I spent in the hospital. Pushing my IV pole on endless loops around the hospital halls, I would gaze longingly at the healthy people out and about and wish I were among them.

Although I’m two years out from the dreaded disease (or, two years and 2 months, as Dr Cutie so astutely recited from memory), the recovery process from the infection was quite lengthy, and it’s really not been all that long since I was freed from the clutches of that wretched bug. Many times as I moved from the infectious disease team’s office in the Texas Medical Center to Dr Cutie’s office around the corner from home and to the plastic surgeon’s office halfway in between the two, I stared hard at the healthier specimens I saw along the way. I remember feelings that ranged from outright envy to smoldering anger at these people who went about their daily business the way I used to. I envisioned these people getting their kids off to school, hitting the gym, running errands, lunching with friends, and doing household chores with ease, the way I used to. I imagined the fabric of their lives being uninterrupted by cancer, the rudest of guests, and assumed that they sailed through their days focused on minor inconveniences rather than big-time medical crises. First-world problems like a cancelled hair appointment or a rained-out tennis match were screechingly replaced by real-world problems like a hole in one’s chest wall that just won’t heal and an insidious bacteria that evades treatment quite stealthily.

Was it survivor’s guilt that hit me yesterday in the doctor’s office? Perhaps. I’ve never been one to wonder “why me?” — neither in terms of the roulette wheel of whose genes will come up hinky and necessitate a diagnosis, nor in terms of why am I now healthy while so many others are sick. Seems like a colossal waste of time and energy to me. I don’t spend much time thinking back about the sheer hell I endured with that nasty infection; partly because I don’t want to go there, and partly because my brain works hard to protect me from going there. There are plenty of gory details I have to work hard to conjure up, and while my intellectual brain knows that of course I did go through all that, my sympathetic brain says let’s not rehash that ugly past and prevents me from really remembering how awful it was. Better to smile encouragingly at the other patients in the waiting room and spend a few minutes of quiet reflection on the road I’ve traveled and how far I’ve come.

You can’t run from trouble…

Posted: May 20, 2012 | Author: | Filed under: literature | Tags: , , , , , , , , , , , | 22 Comments

It’s a quiet Sunday morning, and I’m alone with my thoughts. I’m up earlier than I might have chosen, thanks to one hungry little piggy. After a Friday night of interrupted sleep and a Saturday full of tennis, errands, swimming laps and a late dinner with a favorite cousin, I may well have stayed in bed a while. However, savoring a slumbering house amidst hte sunlight pouring in through the trees and hearing the sweet sound of birdsong while sipping a cup of strong coffee is better than sleeping in.

Plus it gives me time to read my book, Shantaram, which I’ve been dying to dive into but haven’t found the time. It’s been likened to Cutting for Stone, one of my all-time most favorite books ever. If it’s half as good as CFS, I’ll be one happy reader.

Quick synopsis of Shantaram: Mr Lindsay, our protagonist, has escaped from an Australian prison and fled to Bombay. There he meets Prabaker, a native of the slums who renames Lindsay “Lin” and becomes his always-smiling, eternally joyful guide to the big city. Lin falls for Karla, a mysterious woman with sea-green eyes, and pursues her amidst the backdrop of a lively bar called Leopold’s. Lin is “a magnet for trouble, a soldier of fortune, and a picaresque hero” who delves into the black-market world of false documents. I’m not very far into the 944 pages of adventure, but am intrigued.

As I settled in to read this fine morning, I came across an especially well-written passage, which brought me up short. Lin is talking to his new friend Didier in the bar about some of the more unsavory patrons among them. In an effort to avoid being overheard by the bad guys, Didier was “speaking out of the corner of his mouth, like a prisoner under the eyes of the wardens.”

A nice metaphor, for sure, but it gets better:

“In Australian prisons, that whispering technique is known as side-valving. The expression spoke itself clearly in my mind and, together with Didier’s mannerism, the words put me back in a prison cell. I could smell the cheap disinfectant, hear the metal hiss of the keys, and feel the sweating stone under my fingertips. Flashbacks are common to ex-prisoners, cops, soldiers, ambulance drivers, fire fighters, and others who see and experience trauma. Sometimes the flashback is so sudden, and so inappropriate to the surrounding circumstance, that the only sane reaction is foolish, uncontrollable laughter.”

I had a flashback myself last week, and while it didn’t lead me to foolish, uncontrollable laughter, it almost set off a full-blown PTSD attack. I was rushing out the door to get one kid to school and head to the gym, my usual weekday routine. I’m a stickler for taking my own cup to the gym instead of using the styrofoam ones provided. As if our bulging landfills need another cup tossed on the heap. In my haste to get out the door, I grabbed a straw for my cup and scooted out into the garage and into the car. It wasn’t until I was into my workout and gulping water like a crazy person that I realized the new batch of straws I’d bought were bendy straws.

Big deal, right? Bendy straws can be useful, especially if one is reclining while drinking. Or if, say, one is hospitalized for countless days after a post-mastectomy infection. Yessiree, folks, a simple, innocent bendy straw sent me straight from my normal routine of a morning workout directly to the days of being captive in a hospital bed, held hostage by a nasty mycobacterium. Just as Lin was instantly transported from a bar in Bombay to the hated Australian prison cell, I was back in the hospital bed, raging with fever and sick, sick, sick while a nasty bug set up shop under my newly implanted tissue expander. A one-way ticket to Crazy Town in hand, I took the express train down (bad) memory lane.

I wasn’t even thinking about infections, hospitals, antibiotics, or breast cancer when the flashback struck, but I suppose that’s the nature of flashbacks. Triggered by sights, smells, or sounds or, in my case, straws, flashbacks take over and not only interrupt our present business but also disrupt the rest of the day with their nasty after-effects. Interesting how bad memories are just as powerful as good ones. Unlike the good memories, which fill us with warmth and comfort, bad memories suffuse our souls with fear, anxiety, and panic.

The bendy straw that triggered this particular flashback went straight into the trash, and I tried my best to go about my day like a normal person. Finish the workout, chit-chat with my fellow gym rats, reserve a tennis court on the way out, get in the car, drive to the grocery store, fill my cart, unload the loot, take a shower, pick up kids, supervise homework, prepare dinner, clean the kitchen. From the outside, I looked like a normal person doing everyday tasks, but inside I was anything but normal and was once again a cancer patient, fighting my way through uncertainty, confusion, and balls-out fear. In that moment, cancer made me its bitch, and there wasn’t a single thing I could do about it. The only thing keeping me from a total meltdown was knowing that this flashback would pass, that the terror brought on by a simple bendy straw was fleeting.

But as I talked myself off the ledge with soothing reminders that this too shall pass, I know just as certainly that while the terror will pass, it will also return. Again and again, this flashback will haunt me. Perhaps each time it becomes less rapacious, less capable of felling me in one swift motion, but it will return.

“You can’t run away from trouble.  There ain’t no place that far.” ~Uncle Remus

The Phantom Tollbooth

Posted: March 27, 2012 | Author: | Filed under: breast cancer, cancer fatigue, literature | Tags: , , , , , , | 6 Comments

Remember that book from back in the day? It was also made into an animated movie by Chuck Jones, the genius of cartooning. It was written before I was born, by Norton Juster and was illustrated by Jules Feiffer. Not sure what either of them has gone on to do, but perhaps the Tollbooth was enough.

thenewyorker.com

It’s the story of a boy named Milo who unexpectedly receives a magic tollbooth, which he explores in a toy car. Along the way he becomes lost in the Doldrums, where thinking and laughing are strictly prohibited, and is rescued by Tock, a lovely giant watchdog with an alarm clock attached to his belly. The parallels between this story and the cancer “journey” are many.

I was thinking of The Phantom Tollbooth yesterday as I noticed a phantom pain deep in the area formerly known as my right breast, where the evil post-mastectomy infection set up camp and decided to stay awhile. The pain itself wasn’t strong enough to take my breath away, but the implications were, and my mind immediately began racing: what if the infection is back? what if it never fully went away? There were signs of that damned infection, after all, during The Big Dig, which was 9 months after the infection first made itself known.

It’s been a year since The Big Dig, which was my best option for defense against the infection after 267 days of oral antibiotics didn’t fully slay that beast. Nearly a year later, a random pain in the area of my body that was my Ground Zero still has the power to bring me to my knees. Not because it hurts so badly, but because of what it represents.

The idea of the infection once again rearing its ugly head scares me. A lot. I don’t think about it often because I’m busy living my life, but once in a while, as in the case with the phantom pain, the thought does cross my mind. If it did come back, or if it reasserted itself after lying dormant, I would freak out. And yes, that is the correct medical term for becoming reacquainted with the mycobacterium that made a cancer diagnosis at age 40 seem like a walk in the park. The cancer part was easy (relatively speaking) but the myco damn near destroyed me.

Looking back on that dark period of my life is like watching a movie. I see this girl who’s going about her charmed life. Sure there are things that could be better but for the most part it was indeed a charmed life. She lives this charmed life rather out loud, and does “all the right things” to ensure that the charmed life has plenty of staying power. Baseline mammograms at age 36 because of her sweet mama’s premature death; a meat-free, plant-based diet free from preservatives and other nasty; daily exercise; a premium placed on a good night’s sleep; plentiful fresh air and clean water; an all-out avoidance of hormone-filled dairy products for her and meat products for her kids; a plan to deal with the stresses that sometimes darkened her door.

This girl was the last person you might expect to be felled by cancer. And yet, she was.

It’s hard for me to recall those dark days. Of course I know it happened and I was there, but my brain seems to protect me from all the gritty details. After taking in the diagnosis, deciding on the bilateral mastectomy, enduring the surgery and thinking I was on the road to recovery, the infection hit and knocked the wind right out of me.

There’s a vivid PTSD associated with the whole infection thing. I’d bet there’s a whole separate PTSD associated with the cancer thing, too, and it comes out in strange ways, such as a phantom pain sending me straight from normalcy to crazy town without stopping to collect my $200. Could be that the phantom pain in my chest was from 4 sets of tennis on Sunday after a tough upper-body workout on Friday. Or it could be from the wear & tear of multiple tissue excisions and general gutting of the infected skin during the infection’s salad days. When I was a kid, I had pneumonia, and some part of the illness settled in my left lung. For years after that illness, I’d often feel a pain/fatigue in that same spot. Perhaps the phantom pain in my chest is similar.

Very likely it’s nothing to worry about, but once you’ve  danced with the devil that is cancer, any twinge or spot or pain sets you on high alert. Some of us head straight for the catastrophic death spiral my sweet friend Lauren writes about. As she so knowingly puts it “The catastrophic death spiral makes us think a lump in our thigh is thigh cancer, a headache is brain cancer, and shortness of breath after running is surely announcing lung cancer. The catastrophic death spiral is the vortex that is cancer.” My recent phantom pain sent me spiraling before I had a chance to reel myself back in to the land of rational thought. It’s worrisome enough to have already dealt with the havoc that cancer brings, but to also feel the aftershocks of that disaster just stinks.

I expect that the constant looking over my shoulder is common in cancerland. But I don’t like it. I’m rather known for my heightened sense of justice and the idea that if you do the hard work/right thing, you’ll get the payout. But bad things happen to good people every day, and life isn’t fair. People who take good care of themselves get cancer, and people who treat their bodies to a buffet of Animal House-style debauchery outlive them. I know this, yet I’m still brought up short by the phantom pain’s effect on me and how quickly and effortlessly I returned to the catastrophic death spiral.

I was probably foolish to think that there would be an end to the cancer “journey” and that the incidences that trigger PTSD would gradually disappear. I should have known that even after logging many miles and paying the requisite tolls in this “journey,” I would forever be circling, just shy of my destination, and always consulting the map. Once Milo returns home from his trip on the tollbooth, he sees a note, which reads, “FOR MILO, WHO NOW KNOWS THE WAY.” I’m looking for my note and wishing I knew the way.

Phantom Tollbooth's Map of Lands Beyond

Thinking about it

Posted: February 9, 2012 | Author: | Filed under: breast cancer, cancer fatigue | Tags: , , , , , , , | 8 Comments

I ran into a friend yesterday who I hadn’t seen in a while and she asked me how I’m doing. Great, I replied, just great. And in that moment, I truly was. I’d just finished a kick-ass workout and had a few minutes to watch my team play tennis against one of our old rivals. I had a bye this week so I could enjoy the two matches going on side-by-side, plus the gaggle of tennis hens flocked in between courts to visit. Those of you living in colder climates would scoff at our gaggle, in the bright sunshine and temps in the low 50s I’d say, bundled up like Texans tend to do when it gets “cold.” There were tights under tennis skirts, gloves, hoods pulled tight around sunglassed faces, and blankets wrapped snugly. The wind was downright nippy, after all. Good thing we have such fulfilling fellowship to help keep us warm.

Anyhoo, I had a precious little chunk of time after the gym and before picking up my carpool for early-dismissal day, and I was surrounded by friends.

Great. Just great.

Big smile.

Despite the sadness that’s permeated this week with the deaths of Rachel and Susan (and the flurry of blog posts, Facebook posts, articles, Rachel’s beautiful obituary, and personal stories about Susan like this), I’m great. My schedule is full but not overwhelming (just the way I like it). My laundry is done (if not folded and put away). My closet is clean and tidy (I can’t think when clothes are draped and shoes are jumbled everywhere). I’m great.

My friend was glad to hear that I’m great, then asked, “How do you not think about ‘it’ all the time?”

By “it” of course she meant cancer. And at that moment, I wasn’t thinking about “it.”

I thought for a minute before answering. This is an important question.

How do you not think about it all the time? While I don’t think about it all the time, cancer does indeed hover around me an awful lot. Sometimes in the foreground, front & center, and sometimes in the background, inching ever closer and waiting for any opportunity to swoop in and crash the party.

I explained to my friend that for me, it’s like this: you know that feeling when you get caught in the rain, or maybe thrown in a pool, and it’s a while before you can change clothes? That feeling of shirt, pants, and undies plastered to your skin? Heavy and uncomfortable, but not debilitating? It’s like that.

When fully clothed and drenched, one can still function. One can remain drenched for a long period of time and still get through the details of one’s day. The wet clothes cling and maybe even chafe a little, but one can breathe. One can move, onward and upward and from the rainy parking lot to the car, or from the pool into the house. Perhaps one’s heart rate jumps a bit as the adrenaline rushes, and maybe one even gets a little short of breath from the shock of the deluge of water or the careening into the pool, but one is still fully functional.

Myriad reminders of cancer assault me every day. Some reminders are overt, like the news of Rachel’s and Susan’s deaths on Monday, or more covert, like the strange dichotomy of my life’s timeline: events that happened before or after cancer. Reminders can be lasting memories, like the chalkboard sign my favorite girl drew declaring “Mom is feeling better!” a day after I was sprung from the hospital after my mastectomy. They can also be tactile, like the weight of the fleece blanket I used during each hospital visit settling atop my weary body.

The visual reminders pack the most punch: the battle lines of scars that crisscross my body, of course. The prescription bottle of tamoxifen that has a long-term lease on my kitchen counter. The drawer full of bras in various sizes, from the totally flat-chested “it’s an utter waste of money” bras to the “I sure thought this would work for the finished product” bras. The humongous stack of EOBs and bills from the various doctors: breast surgeon, anesthesiologist, infectious disease specialist, oncologist, OB-GYN, lymphedema/massage specialist, GYN oncologist.

Cancer changes people. Inside and out. In ways too numerous to count. In ways both miniscule and grand. Not all the changes are bad, mind, but know this: you will never read one word on this blog, now or ever, about cancer being a gift. If cancer is a gift, I sure as hell hope there’s a gift receipt, because I’m going to return it. And if you’re the sort of person who thinks cancer is a gift, you are most definitely not invited to the party.

Cancer encourages weird thoughts. Because of cancer, simple things like hearing Rihanna sing about love in a hopeless place makes me think not of star-crossed lovers in the projects, but the compassion of friends during life’s most difficult period.

Cancer panics me into thinking that any little twinge is a metastasis. Headache? My cancer has spread to my brain. Hip pain? Oh, mercy, it’s in my bones. Cramps? Ovarian or uterine secondary tumors. Just a couple days ago, I tweaked a muscle on my left side, in between my ribs. For an entire day, I couldn’t inhale fully; taking a deep breath hurt, and my first thought wasn’t the rational realization that I should have gotten a stool to reach the shelf in the laundry room, but the irrational thought that the teeny spot on my lung–most likely a byproduct of having pneumonia as a child–has grown into a tumor so big I can’t breathe.

Cancer elicits a full range of feelings and emotions. There’s exhaustion, anger, gratitude, fear, confusion, relief, distrust, joy, anxiety, and sadness. Sometimes all in one day. There are times in which I’m going about my non-cancer-related business and a wellspring of emotion surges up out of nowhere. My brain must be on constant overdrive. Sometimes the wellspring of emotion is bad and overwhelming, like the thoughts of recurrence. But sometimes it’s good, too, like the happiness humming through my heart when my septuagenarian friend at the gym showed me a photo on his iPhone of his golden retriever, Abby, covered up to her neck in his bed. Why does my heart sing at the obvious love this man has for his dog? Because cancer reminds me that life is fleeting and the good times aren’t guaranteed, so savor the small things. Cancer reminds me to be present in the moment, for you never know when idle chit-chat by the treadmill will flow into a display so sweet in its simplicity, yet so rich in its meaning. That Mr McKay loves Abby enough to tuck her into his bed with a down comforter is rich. That he chose to share that with me is even richer, and that I slowed down enough to engage him, instead of rushing off to my next to-do item, is the best part of all. In my pre-cancer life, I would have been in a rush to get out the door after my workout. In my post-cancer life, I know to slow down, listen to the people around me, and drink in their life experiences. While the weird thoughts that cancer brings get more attention, the beneficial thoughts are there, too.

I had a smile on my face all day thinking of Abby and her besotted owner. No doubt my thoughts will soon run amok again, imagining all manner of cancer-related craziness instead of lingering on the pure sweetness of a man and his beloved dog. Before long, I’ll again feel the soggy weight of wet clothes on my back as thoughts of cancer snake their way through the dense thicket of neurons in my brain.

In stitches

Posted: January 9, 2012 | Author: | Filed under: drugs, pets | Tags: , , | 10 Comments

I had to have a few stitches in my leg 10 days ago. Didn’t write about it because it involved a bite from a dog owned by our BFF, and he (the BFF, not the dog; she’s female) felt bad enough about the fact that his dog bit me, and I didn’t want to rub it in. I’m all for charity, but it takes a backseat to my shamelessness at mining any and all events for a blog post.

So here we are. Full disclosure.

In hindsight, I know that the circumstances surrounding the dog bite should never have converged as they did. I should have known better. If only hindsight and “should haves” meant something in the real world, where dogs tussle and humans intervene. So it happened, I handled it, and life goes on. I still love the dog whose canines ripped my flesh thoroughly enough to expose the tissue underneath, and I know that she didn’t intend to hurt me. I’m just glad our sweet little piggie didn’t get tangled up in that whirling dervish of a dog fight.

Of course the brawl happened late at night, and not during regular business hours. Of course it happened when Trevor was out of town, so that if I did feel the need to go to the ER, arrangements would have to be made for my favorite girl, who’s pretty awesome and very independent, but not at 10:30 at night. Of course I put on a brave face and reassured said favorite girl that everything was fine, despite the unceasing burbling of blood from my gashed thigh. Of course the stitches on the left and the paw-shaped scratches and bruises on the right required me to sit out of tennis and the gym for a few days.

And of course, I had to take antibiotics.

Oh, the dreaded antibiotics.

The idea of getting back into the abx routine was worse than the wounds themselves, worse than the 4 lidocaine shots into the gash, and worse than the stitches. I just finished the last of the Augmentin last night–hallelujah! After 267 straight days of oral antibiotics for my post-mastectomy infection, you’d think a simple 10-day course of Augmentin would be easy peasey, but for me, not so much. Maybe it’s PTSD. Maybe it’s that my body has a heightened awareness of abx after the near-constant dosing last year. Maybe I’m just a big baby. Whatever the reason, facing those drugs twice a day was tough, if only for 10 days. I hope it’s a long, long time before I need antibiotics again.

So the stitches were scheduled to come out today, but after a quick peek my doc said nope, that wound looks way better but it’s not ready to be sans stitches. Gotta leave them in until Friday, just for good measure. Because of how deep the gash was and because it’s on my leg, which moves all the time because I’m not one for sitting still, there’s still a chance it could open up again. Better safe than sorry, right?

I’m ok with the stitches staying in another 5 days. I’m tough, and in general I’m a fan of conservative measures when it comes to my body’s healing. But I struggled to maintain my composure when my doc warned me that the gash is going to leave a scar.

No, I didn’t cry at the idea of a stitched-up gash marring my leg. I laughed — out loud — at the idea that a inch-long scar would freak me out or upset me. That little bitty scar is nothing compared to the miles of track already laid.

 

 

 

I buried the lead

Posted: September 24, 2011 | Author: | Filed under: breast cancer | Tags: , , , , , , | 1 Comment

In my post yesterday I committed a journalism felony — I buried the lead. See, the lead is the most important part because it gets the reader’s attention. Typically the lead belongs in the first paragraph, to suck the reader in and encourage him/her to read the whole story. The Weekly World News and The National Enquirer have mastered the art of not burying the lead. I learned about that at the Paul Miller School of Journalism & Broadcasting back in the Dark Ages

I didn’t mean to tease you.

I forgot to mention something pretty important yesterday, and I thank the kind readers who expressed concern. I have been fearful of starting my period, but have absolutely no reason to think that will happen. There’s been no, er, physical evidence; nothing but my own cancer-fueled insanity to make me think this fear will materialize. I could imagine this bout of insanity becoming a sleeper sequel to the 2007 Daniel Day Lewis movie. Instead of the story (based on Upton Sinclair’s novel Oil!) of the early oil boom in Southern California, in this story, There Will Be No Blood.

There will, however, be insanity. Plenty of it.

 

 

 

Daymare

Posted: September 23, 2011 | Author: | Filed under: breast cancer, cancer fatigue | Tags: , , , , , | 5 Comments

What do you call a recurring nightmare that happens while you’re awake? Recurring daymare doesn’t sound right at all. Whatever it’s called, I’ve been having it. Guys, you may want to click on over to espn.com or continue searching for pics of Minka Kelly in a bikini because I’m fixin’ to talk about some lady stuff.

This blog has been my outlet for all things cancer-related: the good, the bad, and the ugly. Sadly, the latter two categories way outweigh the first in this trilogy, but that’s when you grit your teeth and plow right through it. There’s been much discussion on this blog about highly personal things, and lots of talk about boobs (sorry, guys; not the Minka Kelly type of talk). Such discussion is brutally honest and at times of the sort that makes people uncomfortable, but that’s how I roll. I could no more ignore the elephant in the room than root for the Yankees (dang, even the thought of that makes me sick to my stomach). I never learned how to sweep things under the rug or look the other way, and I’m not one bit sorry.

So, with the disclaimer out of the way, it’s on to the recurring daymare. Several times in the last few days I’ve had a moment of sheer panic when I think I’ve started my period. Not sheer panic in the sense of it’s gonna be a gusher and I’m in my white tennis skirt far, far away from any feminine hygiene products. No, this sheer panic is in the form of a stark realization that if I were to start my period again, after 17 months, that would signal the end of my chemically-induced menopause.

And that would be bad. Very bad.

Not that I love menopause, not by a long shot. I especially do not love menopause at the age of 42. Going through the ‘pause a decade early is cruel and unusual on many fronts: it’s yet another reminder of having been diagnosed with a potentially deadly disease while my kids were still in grade school; it sucks to be enduring it years before my peers; and it forces me to face all the unpleasantries of how breast cancer can destroy one’s self-confidence and body image at a time in which one should be living large in the prime of one’s life, to name of few.

But menopause for me means that the hormone suppression — which comes at quite a cost — is working. It means that the hormones that fueled my cancer are gone. There one day, gone the next. Hormone suppression causes me a litany of problems, but it means instant famine for my cancer.

If I were to start my period, it would be a red flag (pun intended) that my ovaries were pumping out the hormones that cause a technically-she-should-still-be-fertile woman to start her cycle. And while I’d love to return to that carefree time in which my ovaries pumped out whatever hormones necessary to keep me from being the withered husk of a woman that cancer tries to make me, it would be very bad news. I’m already on the short list at my doctors’ offices (plural) for being a troublemaker. The last thing I need is to ring my onco-crush, as Trevor calls him, to say, “Guess what? The ‘take one pill daily for five years’ Tamoxifen and the quarterly shots of Lupron aren’t working anymore.” I think that sweet man might have a heart attack. And I’d never hear the end of it from Dr S, who not-so-secretly thinks I invent symptoms to have a reason to go see my onco-crush, all the while shaking his head and muttering about what anyone could possibly see in a young, handsome, fit Peruvian doctor when there’s a much-older, much wiser plastic surgeon to adore.

This latest daymare is a perfect example of the PTSD that cancer patients endure. I imagine there are some cancer patients out there in this big, wide world who finish treatment and declare that chapter of their life closed, never to be stressed over or fretted upon again. I’m clearly not one of them. I hear tell that one day, this nasty cancer business won’t be in my forethoughts all the time but will be demoted to a back-burner status. I’m not there yet, but I’m hopeful. For now, though, the thoughts are there, and the fears are many. Things that used to scare me don’t scare me anymore (namely needles, but having been poked so many times I’m over it. In fact, I gave myself a shot the other day, like it was a normal, everyday event) but things I never knew were scary now scare the fool outta me. If that makes any sense.

The other day I was chatting with a friend in the parking lot in the brutal and ongoing Texas sun, and suddenly I felt something that flipped the switch from “I’m a normal person having a normal, non-cancer-related conversation with a friend” to full-blown panic, just like that. The feeling? Something wet was collecting, not quite pooling but definitely collecting, under my newly constructed right breast, site of the infection of the year that turned an average bilateral mastectomy recovery into a shitstorm, for lack of a better word.

I went on with my normal, not-cancer-related conversation, hopefully as if nothing was wrong, but was seriously panicked inside. Visions of hospital beds filled my head; the hospital smell that I dread more than words can say infiltrated my nose; and I could almost feel the 20-gauge needle puncturing my skin to access my port so the army of big-gun antibiotics could get in and fight the enemy. In my mind, I had been admitted and diagnosed with a recurrence of that damned infection within the span of a couple of heartbeats. In reality, it was a simple bead of sweat.

Ahh, yes, a simple bead of sweat. Such a common character in the land of perpetual sun, magnified a few million times by standing on a blacktop surface. A simple, everyday occurrence in the life of millions of Texans and citizens of other hot (but not as awesome) states in this fine country. One little bead of sweat that most people don’t even notice had the power to instantly transport me back to the hell that is included, free of charge, with a post-mastectomy infection.

Somebody wake me from this daymare.

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