Chemo Brain

Ugghh… I really didn’t want to write about this. This is the blog idea in the bottom of the barrel, the one I pretend I don’t see every time I reach in and randomly pull one for new ideas each week. But it just kept being the lucky winner and I just kept tossing it back in and finally this week I said you know, maybe God is telling me it’s time it got out of my craw. Like food poisoning just kills you and cramps you till it comes up and is out, this thing has festered in the deep corners of my mind for years. With a serious yuck factor, (as a friend described something else this week,) I put it in a tightly sealed box years ago and sealed my lips along with it. But now it’s more like that tub o’goo in the garage, you know the one with mysterious fluid kinda seeping out it? Truth is, I’ve been reluctant to even sniff at it, certain of the toxicity within; so not wanting to take it out and relive it again.

And too, I fretted with my son as I wrote this week that I didn’t ever want to be a rant blogger and did he think this sounded too rantish? But darn it, I can’t tell the story without sounding rantish, so bear with me. I need my cancerchicks to catch this spew for me. It feels so gosh darn icky to me because in the end this all speaks to something ugly like discrimination, pigeon holing, and worst of all, unkindness. Cancer could take my hair and my breast and even a chunk of my self-esteem, but not me. This thing scared me more so than cancer, because this thing had the power to bring me down, to bring the me in me down, and that frightens me… still….after five years.

To be honest, chemo brain is something I sometimes wish I really did have so I could forget this story. But in a witness to just how good my faculties were at the time, I do remember the details with laser clarity, and forever will rue the day I ever uttered the words “chemo brain.”

It’s time for a good ole mental purging methinks.

First a disclaimer, there are no realities, only perceptions. This is my perception.

Deep breath, here we go.

You all know I had just gone through a not so happy !SURPRISE! divorce just about four years before I was diagnosed with breast cancer. During those in between years, I was working my not so little hiney off not only to recover emotionally, but fiscally in order to get out of divorce debt and survive. Short of a bit of child support, I was the sole provider for my family. Work had served to feed me figuratively on the inside, making me confident again, and literally by feeding my family. Work and working were very important, very crucial to my survival on many basic levels.

Now I will not name any names because with chemo brain I of course can’t remember names, but just so you know, at the time I was diagnosed I did not own my own practice like I do now…but I was working, got it? And I obviously, when I got sick I needed to keep working to keep health insurance to pay for the little extras in life, like say chemotherapy and well because we were spoiled having a place to live and food and all.

The story starts there, working full-time for like four years and then getting diagnosed with breast cancer. It’s important for you to know the staging, as a drama is gonna unfold here.

What I remember in my Adriamycin pickled brain, was that the story started with,“Oh how nice. People are offering to take me to the first medical appointments.” It started out all nice but that warm fuzzy went rapidly south and within less than a week the honeymoon was over.

Suffice it to say that someone who will go nameless (like Voldemort-he who must not be named) and who was vitally linked to my continued employment, decided that she, “always wanted to life coach people with life threatening illness.” And Voila! It was her lucky day, because here I was a captive human guinea pig, right in her own back yard (or employee pool be the case.) Talk about being a luckygrl. Now mind you, no one asked me if I wanted to be life coached through my life threatening illness, but that was beside the point. It’s not all about you punkin when you have cancer, just remember that.

Further, I am a girl who hates to have her picture made (southern speak for having a photo taken.) I know, it’s weird, but pictures do nothing for me but serve to point out how old and overweight I really am, and this form of denial serves my self-esteem well, so just go with it. So, imagine my delight when I found out, early into it that the life coaching was to actually be a docu-drama, complete with a scrapbookey kinda daily blog/email published on every detail of my life, which of course was currently being threatened with illness. And it just got weirder.

Seven days into cancer, I found myself laying on a gurney in tears about a hospital snafu in arranging for my port to be installed. I was looking all so come hither in a shower cap with a snot nose as I was being wheeled out to surgery….with a camera zoom lens in my face, snap snap snap, picture after picture. In a somewhat comical turn, the gurney attendants started running to get me away from the shutter clicks, as I think they were freaked too. But alas, I was chased down the hall like a freaking Lindsay Lohan with paparazzi in pursuit.

Ten days into cancer, I was at my first chemo appointment; you know, the one where they really drug you up cause they don’t know how you will react to the red stuff? Yep you guessed it; the day was all helpfully chronicled in photos along with a five-page narrative blog posted online and emailed to everyone I knew about how I almost fell off the toilet from the drugs. This “falling off the toilet” story was what I read in horror as I sat in my upstairs bedroom…. next to a Christmas tree (aka The Cancertree) covered with pink balls.  Why, might you ask did I have a Cancer Christmas tree in my bedroom? I will tell you; because the tree was assembled and decorated in my upstairs bedroom in my house on a day that I was at the Nutcracker with my kids. A male vitally linked to my continued employment, got a neighbor to let him in the house (saying it was okay and that I knew.) He was instructed that a key scene in the docu-drama was to put the tree in my bedroom, not downstairs, not in the kitchen, not in the TV room, but in my bedroom even if he had to step over the weeks of dirty underwear, old plates with food on them and other unmentionables on the floor/bed to get it in place. (Remember those dark weeks when first diagnosed? Yeah.)

Okay, okay I get I get it, said person was trying to be nice. My Pop has always said you have to back up and look at intent, and I know the intent was good. But even seasoned professionals in the cancer field were like, “Lauren that is all a little bizarre, you need to nip that in the bud girl.”

Even Chemo Nurse Extraordinaire Marci, mother of five and patient soul that she is was kinda weirded out at the unusual behavior in the chemo lounge; you just don’t see a lot of camera’s in the infusion room. Other patients’ privacy was being compromised not just in photographs but in the weblog. Casual conversations that the other patients did not realize were actually interviews (as they were given the benefit of complimentary life coaching during my infusions) were published…with names…online….as in, “Gale napped and did not look well at all” (perhaps because she had cancer?) So I was told by the Big Guy to seal her off. “Gladly,” I thought. But how could I do that and keep my job? The answer I found out later was I couldn’t, but I will get to that later. Honey, if I thought waking up in the middle of the night to a pink glowing Cancer tree was a little uncomfortable, imagine how it felt at work as this “sealing off” took effect.

So I tried to politely say, “Oh no really it’s fine I have other friends (without cameras and a handy laptop for the weblog) who want to go with to chemo today,” or “You don’t need to go to my MRI’s and bone scan, it’s just pictures…nothing to learn there, he he.” Suffice it to say that the director was none too happy at the halt in production on the docu-drama, I mean really, after all, how was she to learn from my experience and become a good life coach if I wouldn’t let her in the bathroom with me at chemo for god sake?  The final straw came on a day at work when it was explained to me that a woman in rural NC had been located and an appointment made for me to walk in the woods with her to conduct earth acupuncture and help me understand what unresolved emotions from my childhood had given cancer. Now while I might consider that the white centers in Goetze caramels, or my unresolved addiction to processed sugar in the form of Swedish Fish poked the cancer skunk, I was so not going for a walk in the woods to get poked with pine needles in an attempt to find out how my guilt that my hamster died when I was 7 caused my cancer. I said however, “Oh how nice of you to offer, perhaps when I am feeling better that would be great.” Not.

I knew something was up about 3 weeks into chemo, and a few weeks since the last world-wide weblog updating folks about how I was, “just not doing well emotionally with cancer and crying all the time.” I was told it wasn’t a good idea for me to come into work anymore. Nicely however, in a generous and concerned kinda way, like they cared about me, as in,“Oh sweetie, you can’t get well working so hard and with all the germs here.” And so for a short time at least until the big red devil infusions of AC were done, and until Taxol dismissed the nausea, I agreed to do what they said; really, I had no choice. Now mind you I was looking at almost 40 weeks of chemo ahead of me after AC, so not working during all of chemo was simply not an option (along with dying if you remember.) I only got paid for work I did, there was no sick time here, no FMLA . Second, I don’t work on a loading dock in a shipyard, I talk to people for a living, it’s hard, but not hard labor.

Four weeks later, the red devil was history, and I was well on my way to Taxol and Herceptinville. While my hair would not be going out hair for at least four more months, I had some really cool wigs (NOT courtesy of BCBS BTW) and was ready to roll. I was gone maybe 4-5 weeks tops and let me tell you, it was not a good few weeks mentally because so much of my identity and sense of fulfillment is tied to work, I love love love what I do for living, and it feeds me. And anxiety built as paychecks stopped. So, while I agreed to start back slowly and delicately, I was very excited to be getting back at it and back into life, and away from the Cancertree too.

As Paul Harvey used to say, and now the rest of the story.

I went back to work doing something I had done for 20+ years. It is a highly specialized field, a difficult and complicated thing that I do, requiring years and years of training and experience to do well. I know my work like I know the back of my hand; my work comes intuitively at this point. Second, before I got sick, I had worked for months contributing all my professional and personal knowledge into both writing and marketing a new program on co-parenting after divorce. I am divorced, I co-parent and I am a pediatric psychologist. The catch here is that the program was written with said life coach/docudrama director.

I came back ready to jump into both of these roles.

But not so fast Missy.

I hadn’t even gotten in the front door and knew something was very wrong. Like a harbinger of things to come, on a little side table just inside the door, there it was. A fanned out pile of shiny new trifold pamphlets, with docu-drama’s face looking up at me, all featuring a 3 page spread describing how she and “The New Girl” were offering the fantastic new program on co-parenting. Who was “The New Girl” you might ask? I dunno, know she wasn’t there when I left five weeks ago. Later when I asked about this curious little turn of events, I was told that I must have been mistaken, I was never going to teach that program…silly me, perhaps there was something wrong with my memory.

It went from bad to worse. I was assigned my main work sparingly, surely not enough to feed a family on. The first version of why I was given less work was that I needed to ease into things. Later I was told that horrors, the problem actually was that there were typo’s in the reports (just FYI, there have always been typos in my reports and blogs, I do have a bona fide reading disorder and I will add, if you are paying a fortune for transcription services then why….oh never mind that sounds ranty.) The atmosphere in the entire office was downright icy. A new playgroup had been formed and I was clearly out for not playing well with others it seemed. Weirder things were happening, like they had a picture of me from pre cancer, looking like “me” up on the website. A few months into my return, they insisted that they needed a new picture of me for the website, why I don’t know. I refused, because at that point I had that hair that looked like someone who had chemo had their hair growing in, and I was still had that face bloat from steroids. But lo and behold, one day no lie, I was sitting in a closed office dictating my typo riddled reports; the door cracked open and a camera zoom lens appeared and snapped. “What are you doing?” I asked, “Oh nothing, don’t worry about it,” was the answer. And yep, my bloated chemo haired visage was on the website that day.

Even when work tried hard to find me, and referral sources that had used me to do their work for years called me directly to request me, I was told by the office, “It’s not okay for you to schedule anything, we will schedule you.” And I was told that my attempt to schedule my work was,“an approach that doesn’t work well in the office.” Work was given to “The New Girl,” who as far I could tell, had just decided last week when she got out of grad school that “working with abused kids might be sweet, even though I never did it before.” And, “Sure I can teach co-parenting, no worries that I have no kids and have never been married.” (Okay that’s mean, no offense to this girl, and really I have no idea who this girl was or her qualifications, heck I can’t even remember her name cause of chemo brain.)

Finally, I walked in one day and was taken into a private office and told, “You can’t work anymore.” Now I wasn’t fired mind you, just told I could do filing and answer phones and such, but needed “to find something else to do,” other than of course the job I had trained 20 years to do and was credentialed as an expert in, or of course, teaching the program I had written. Then the other shoe dropped. I was told there was concern about my cognitive functioning being impaired after chemo. This battering about my work and telling me I was confused about the teaching the program had now gone on for about two months, and I had 18K in medical debt gnawing at me at this point. I was freaking out, and like with the Stockholm Syndrome, I decided the best bet was to in a small way align with my captors, as they held the food and roof for my family and the keys to affordable radiation in the future. So I conceded to them that yes, I was emotionally ramping up and adjusting to life back at work but really, I felt fine after almost dying, and I knew how to do my job. All I could see was my health insurance slipping away, my licensure to practice being mucked up with crazy accusations and finally, the impossibility of me as a single parent getting insured ever again without selling a kidney. But he insisted there was something wrong with my brain. I told him I would go get tested to prove I was fine.

So I go get tested, big time neuropsychological testing and a visit to a psychiatrist to boot. I received not only a clean bill of mental health stamped on my forehead, but told I was indeed intact cognitively; in fact, was a whole lot more than able to do my job. I was given some other advice across the board which I later took too. But for now, like Dorothy retrieving the witch’s broom, I walked in and laid the evaluation results at the wizard’s feet. And like Dorothy, I was told, nope still not good enough. Go back to Kansas.

You can guess the end of story, I did what every professional I saw recommended I do. I am a successful small business owner at this point. Once I heard that another employee later asked about me, “If she was so brain-damaged, how is her practice so successful?” Go figure. Perhaps the null hypothesis was true after all. And here I blog, dain bramage and all…

Okay so that is the tale of woe.

Have you ever had something that you made light about and made a joke about and then someone took it seriously and it tuned into something really bad ? Like say for instance you were joking about your forgetfulness and made a joke you had Alzheimer’s (which I know isn’t funny but people do joke) and then people started spreading rumors to everyone at the PTA you were losing your mind? Or like making a joke on a very rough day about needing a beer at noon, kidding and saying “Well, it’s five o clock somewhere!” and suddenly someone took it as you had a drinking problem?  That is what happened with chemo brain. How I wish wish wish I had never uttered the words chemo brain. But I did.

Chemo brain. I had heard so many jokes about it in the chemo lounge about it, chemo brain was the new old timers joke, we bandied it about with giggles like others do about senility and hot flashes. So yep, one day at work I joked one day about chemo brain, and suddenly there you go, I was branded. I was later told that after my dismissal to Kansas they had a staff meeting announcing in an oh so concerned way, “We think something is wrong with Lauren’s brain from the chemo,” and “We think chemo did something to her brain.” Nice.

Does chemo brain exist? Was something else at work here like maybe their insurance premiums were jacked up, or anger about the whole life coach thing? Or had I lost my mind? Hmmm…

Bottom line is this. We do hear a lot lately about the concern for chemo brain. Researchers are looking at the impact of chemotherapy on cognitive functioning and often talk about the groggy, numby can’t think like feeling cancer patients experience. Surf the internet and you will find a thousand stories about it and research. But suffice it to say you will find heated debates about whether it truly exists, is an urban legend like the alligators in NYC sewer system. While the jury is out on the true concrete physical aspects of this cluster of symptoms, I think I can shed some light on what is going on emotionally, and I don’t need no docu-drama to do it.

A run in with mortality is a bit unnerving. Being faced with your children being motherless, financial ruin, job loss, hair loss, amputation and radiation tats, all while having NO energy and throwing up; yeah, that’ll rattle your cage a little. As I have discussed in earlier blogs, you likely have a teensy bit of PTSD working on you girlfriend. When you look at symptoms of that or acute stress, difficulty concentrating and psychic numbing are often the main features in the PTSD docu-drama. It doesn’t mean you can’t function or are brain-damaged; it just means that the grim reaper screaming in your face for months is a wee bit distracting. You almost died, and really aren’t sure you are out of the woods yet. Alarms have been going off for weeks now, and it is hard to think when sirens are sounding all night long. You have been through the ringer emotionally and physically. You’ve been very sick, you don’t look like you, parts  of your body are gone and well, there is a whole heapa stuff to navigate….somehow, in all that, a typo seems like small potatoes…or is it potato’s?

Psychic numbing serves a good purpose though. It’s kinda like your mind is putting something on the back burner until you can deal with the enormity of it. Like a big ole scab or a blister, it’s protecting you from something a little too overwhelming to process at the moment. Perhaps too so you can heal from the bottom up, your mind just wraps a little layer of insulation around it to keep it warm till you are ready to think.

People do emerge emotionally different and raw from life threatening events, it doesn’t take a life coach to figure that out (maybe if I had a life coach I would not have had chemo brain?) You have been faced with the one of the worst things in life that human beings come up against. You are grieving a million things, you are still in shock, you are still in crisis, you are overwhelmed with appointments and details and you haven’t slept well in a long long time. You are still unsteady and weary. Inside your head, it is frightening. You don’t have trouble thinking clearly, just thinking anything but cancer. The world feels like it has shifted and it is dizzying. This sensation my dear, is PTSD at its best, the numbing, the difficulty concentrating, the difficulty sleeping. You are not brain-damaged, you just had the wind knocked out of you is all. Throw into that mix a little extended Ativan use (confusion and memory loss are side effects,) steroid use, and constant anxiety (which really takes away focus) and yeah, you might miss a tpyo or two.

Was it chemo brain in my situation? In hindsight, I don’t think so, but the point is that chemo brain was used as an alleged valid excuse to let me go from job. And that is just so not cool. What corks me off is the notion that if you went through a horrendous car accident where you were months in rehab learning to walk again, everyone would be all over assisting you. Any time you stumbled or had difficulty opening a door, people would race to get that door, to help you re-navigate the world and encourage you. Yet with emotional recovery from cancer, people are likely to slam the door shut instead. Maybe it just speaks to the world having discomfort with the intangible and nebulous nature of dark emotions going on in our head. Mental health issues still freak people out and unnerve them. They can handle overt physical things, like a heart attack or leg amputation, but emotional manifestations of illness, not so much. People want to think you are done chemo, get on with it, but there’s a whole lot more to recovery than a last infusion. Maybe people don’t want to believe cancer takes longer to get over than just hair or breasts growing back.

My advice to you in the chemo brain or whatever it is arena? Cut yourself a break, you almost died girlfriend. Be kind to yourself, you are just coming out of one of life’s most traumatic events. Talk about it, don’t hide it, trauma is a sledgehammer to the psyche. It’s okay, you are bruised and will heal I promise, even without a life coach or earth acupuncture. You can work, you can parent, you can have sex, you can do all those things, but convalescence is needed. Be kind to yourself.  Heal. the mental healing starts right about when the physical aspects are done. Although cancer has left your breast, it has not left your head yet. Perhaps chemo for your brain would be good, not to be confused however with chemo brain.

Chemo could steal my hair, chemo could steal my time for a year, chemo could steal my white blood cells, chemo could distract me, chemo could steal my ability to eat hot and sour soup for a year, but chemo could not and did not steal my mind.

Be sweet to us. Girl be sweet to yourself. Have a Goetze caramel or two, hell the damage is already done…just not brain damage that is.

Kindness people. Kindness. Cancerchicks need your kindness yes when we are in treatment, but more so when we are learning to live and breathe again. Help us learn to live again, don’t take our life away. Help us navigate life after cancer because the rules of play have changed; I find this true, even after five years.

And gosh darnit, don’t call me brain-damaged when I am traumatized. It just traumatizes me more.

“So shines a good deed in a weary world”

Willy Wonka and the Chocolate Factory