The Red Devil Speaks The Truth

Chemo cycle 5--the switch from 4 rounds of Docetaxel ("T") to my first of 4 rounds of Adriamycin + Cyclophosphamide ("AC")--will remain etched in my memory as the one that brought me to my knees, the week that I could no longer take respite in my "informed denial", the week of relentless crying and pain and searching for strength, and the week that I finally, just finally, accepted the stark truth about where I am, which, as I later learned, was the long avoided but all too necessary prerequisite to grasping where it is that I want to go.

Adriamycin is termed "The Red Devil" by those in the know, due to its vibrant color, wicked toxicity--it must be administered manually by the infusion nurse in order to prevent even a microliter of caustic leakage outside of the vein--and of course, its malevolent side effects, which in my case, persisted for at least one full week post-treatment. What made it so difficult was that this was the first time I truly felt "sick" since the day of diagnosis. Of course, since beginning chemo, there has always been a bit of low-grade malaise, a feeling of things being just not quite right, a physical slowing down, difficulties with short-term memory and the frustration of not being able to reliably retrieve the "right" words on demand--but overall, nothing that kept me down for too long, nothing that I couldn't shake off and find a way around to keep going. This all changed, however, when I had my first dance with The Red Devil.

Looking back, I realize how well I set myself up for this, when just a few days prior to treatment, I decided for the first time to pick up the packet that had been sitting around since June and look at my mammogram, CT, and MRI films (which, scientist I am, from day one, I had demanded, err, I mean politely requested, copies of all "data"). So, there I was, alone in my office, staring reality in the face, transfixed by the areas of contrast on the images--which had they not been mine, would have been beautiful in that all too textbook perfect way--counting the positive nodes, comparing my interpretations with the pathology reports, and furiously crunching numbers on websites (e.g. cancermath.net, adjuvantonline.com) that are probably better left to use by oncologists rather than patients (but what the fuck, I know too much and even if I didn't you can be sure that my triple-type A, hypercompetitive, get-the-fuck-out-of-my-way-I'm-not-stopping-til-the-end self would be damn sure to obtain all necessary info).

So with this fresh in my mind, and several nights of sleep deprivation, plus pre-treatment anxiety over switching to harsher chemo meds, I ended up losing it, actually losing my freaking mind, from pretty much the moment I sat in my chair. The tears came hard and fast and I couldn't stop, never mind at the time even process why this was happening. I had never, never, not once cried in the infusion suite; in fact, so far I've been the poster child of hope and serenity, sailing through every fucking third Thursday when I take my usual seat, surrounded by the other "regulars" on the same treatment schedule. Others, whom I might add, always seem to be happy to see me, who seem to be cheered by my shirts and hats with their sassy, in-your-face commentary like "Cancer, you picked the wrong bitch!" or straighter to the point, "F*ck Cancer". But this day was different, off, and out of control. When I realized I couldn't stop the tears, I wanted nothing other than to hide, to crawl into the fetal position and stay there until it would pass like the nightmare it felt like it was. But how the hell to escape with a line, drip pole, and various other medical accoutrements? I did the next best thing, which was to gather it all together and wander the floor, finally settling on standing in a corner, where I had some degree of privacy. And there, dear reader, is where, thanks to my astute, compassionate, and Ativan-wielding nurse (what an angel!), I received my entire infusion, except for The Red Devil, which my nurse very kindly deferred until last, knowing that it would be some time before I could collect myself and crawl back into my chair. Standing there, hiding in the corner, I called Boy, and between tears and i.v. bag switches tendered unobtrusively by my angel-nurse, I tried to explain that I couldn't cope and asked that he talk to me about anything, anything at all, just help me get through this, distract me, please help me...

And he did. I cannot tell you a single word that he said that day, but really, the words were not the point. It was the strength and the caring in his voice that was important--at the moment, this is what kept me anchored to that spot long enough to complete most of my treatment and eventually, which even led me back to my chair for my final infusion.

And this is when I faced another of the many harsh realities of disease, which is that despite my best attempts at informed denial, cancer ultimately is a singular, lonely experience--no one can do anything at all to change it, or share the burden, or crawl into your mind or body and know for a second what it feels like, but this somehow doesn't change the fact that you still want to forge this impossible human connection, to seek understanding and solace that cannot be had. One of the things I figured out pretty early on is that going through this without a parent or a spouse is damn hard, and no matter how loving and dear to my heart are my friends, they simply cannot put their arms around me as a mother or a husband would and let me get lost in the (if only fleeting) belief that in the end, it will all be ok. Perhaps this is why, when we meet each time for the kid exchange, Jackass almost always tells me just "how strong and amazing I am". Well, although to him I say nothing, inside I do know that yes, I am that (and so much more), but this is a digression probably better left to discussion in another post.

So back to treatment day, somehow (I remember not), I made it out of there and back home. The first few days passed in a haze of nausea, sleep, and fearful depression. It was all I could do to move from my bed to the sofa. My depression was so severe that had it not been for my children, I might have seriously considered checking out. That is, I do know the thought occurred more than once, and I was still desperate for finding an escape. Running through all of this was the undeniable realization that I am sick, I have cancer, and I am afraid. It wasn't much of a stretch to think about the many losses, the slow stripping away of my life that had been happening so gradually, that I had failed to fully notice. I have never felt so beaten, so helpless, so unable to control. And let's face it, I am a controller, a person who always has a plan (which is always backed by plans "B" and "C" and usually even "D"--did I mention that I am a controller?). But this? There was no plan for this. I had exhausted every resource, and was too physically weak to formulate a plan for getting my ass off of the sofa, much less a plan to break free. So there I stayed for days, waiting in misery, waiting for it to pass, fixated on death, too scared to sleep because (at least in my mind) there was a real possibility of not waking back up.

I wish I had some good explanation for how my mind eventually kicked back into gear, but this too was a hazy event. I do recall a major shift toward the end of the week, when in a moment of clarity, I came to understand that no matter how important, no matter how much desire, no matter what, that there are some things that simply cannot be controlled. Of course, to most people this is quite obvious. But for me, I don't think I really accepted it til then. And I must say, it scared me silly. All of my life has revolved around the illusion of control. Of course, we are all dealt circumstances that defy control, but not me, oh no, I've always found my way around the seemingly impossible. I am a fighter, indefatigable and unstoppable. Determined and perseverant, full of guts and plans. If the first one fails, so be it. I will always find another path. And so far, so good. It hasn't been pretty nor straightforward, and certainly by no account has it ever been easy, but in the end, I have always found my way.

So in the quiet moment of this revelation, I did the only thing that made intuitive sense. I surrendered. And you know what? This led to the second epiphany, which is that although I couldn't control my disease, nor more to the point, the quantity of my days ahead, I nevertheless could control the quality of my days. Sigh. Another point that is so simple, so fucking trite, and so true--and yet, was so foolishly overlooked by myself til then.

Fast forward a couple more days ahead...I decided to make the proverbial bucket list. For those of you who have not tried to make such a list, a word of caution: it is hard, damn hard, to sit down, reject autopilot mode, and get real on what is meaningful in life. I started with some of the easier, more obvious goals, and found that if I make time to be quiet every few days, more answers come. I suppose it was the compilation of this list--which ironically, returned an acceptable level of control--that saved me. And of course, the loving friendships of those who all along were there that week, ready to listen, to do, to help in any way possible. My only regret is not having had the courage to let more of my friends know sooner the depth of darkness I had been in. I am finally starting to accept that even the strongest, most competent, skilled, and independent person has limits...and vulnerabilities...and can (and should) depend upon others. Given my past (thanks so much, Jackass and runners-up, my family of origin), I don't know if I ever really will be able to trust, but for now, I am surrounding myself with those I hold dearest, and am hopeful that one day experience may teach me otherwise.

And so, dear reader, I did get my ass off of the sofa, and decided from that moment on to live each day as authentically as possible (loosely translated as reconnecting with who I am and very consciously, very deliberately deciding how to spend my time). Made a visit to Boy, which accelerated progress in this direction beyond belief. I have since gone for AC cycle 2 and much to my surprise, have yet to feel any debilitating side effects, nor has any depression surfaced. I feel as though this time I am laughing in the face of The Devil, almost daring him, the son-of-a-bitch motherfucker, to head my way. I will never know how much time I have (and really, who among us does?), but things I do know for sure: I am now living life on my terms, with fearlessness, with no regret, and with as much contentment and peace as can possibly fill each day.

Oh, and this more recent cycle (three days ago) when I had that initial, ever so slight wave of nausea announcing the impending arrival of The Red Devil, I knew better. I went straight to item #1 on my bucket list (involves distance running), and headed for the gym. There, on the rooftop track--as I admired the gorgeous harbor side sunset and conversed with my friend Josh (who is in heaven and assures me that they truly are not ready for me any time soon)--I claimed control. This time, over the course of a 4-miler that flew by nearly effortlessly, I decided to reduce the Red Devil into sweat and spit that I ground into the asphalt with each stride, letting my thoughts unravel, cocooned in joyous gratitude for being on my way to that place where I finally, just finally, realized I am intended to go.

The Real Reason Why I Became A Scientist

SEX!

Yep, let me reiterate: SEX!

This is not particularly original, nor probably even interesting. But it is the truth.

When I was young (I mean really, really young, i.e. a teen in my "formative" years), I was (gasp!) boy crazy. And I thought that a girl sporting a labcoat and spouting highly complex scientific analyses--yet exuding certain feminine characteristics (namely lipstick, short skirts, and cool hair)--would be the ideal mix of serious and sexy. Not to mention that there were very, very few women in science (not like that has made an acceptable shift 30+ years later, which, sadly, we do need to discuss sometime). So, at least in my then quasi-analytical view, I interpreted that the numbers would make things much more interesting. And besides, what male has not had (or at least appreciated) the dichotomy that is at the heart of the good old librarian fantasy? Add to this the then released Thomas Dolby*, the opportunity to rebelliously break into something so entrenched into the bastion of the male domain (yep, I was a blooming third wave feminist before I knew it)--coupled with the appeal of pursuing something that was challenging (science actually was not my easiest area, but I had thought it noble to select a challenge over a more sure-shot, fool I was!)--it all came together in the final decision.

Regrets? No, not really. It has been all I thought it would be and then some. I have enjoyed the challenges, and especially succeeding in the faces (emphasis on plural) of adversity. Being on the forefront of discovery and new knowledge is supremely cool, and some days I am lucky enough to see first hand that there is so much beauty in biology that it literally brings me to tears. But, back on point, did becoming a scientist indeed enhance my sex life? Of course it did. At least I think it did. It certainly cut to the chase by boosting encounters with my preferred "type", i.e. super-smart, tech-savvy, somewhat geeky, socially awkard but otherwise utterly adorable males. It even connected me with my soon to be ex-husband (otherwise referred to as the "Wingnut" when I'm feeling generous, and the "Jackass" when I'm feeling particularly direct).

And for the present? Well, in my dreams, I still wonder whether some of these childish notions actually derive from a very real, albeit inexplicable connection that may bring me back--somehow, some day, some way--to my Boy.

* "She Blinded Me With Science", from The Golden Age of Wireless (1982)

Running Violet done R-U-N-N-O-F-T to Chi-town!!

This was one of the most surreal experiences I've had in years, save the day of diagnosis (well ok, and the couple of weeks the kids and I spent in hiding, since one day I may take us into that story). Anyway, as I drove the highway en route to the airport, I don't think I will ever forget how I felt so damn liberated, and slightly naughty, and just plain amused over what seemed like the first time in forever, doing something that I (me! just me!) really wanted to do. Onto the plane, letting my mind wander in and out of my i-Pod, my long-lost inner bad grrl channeled through every beat, letting me know how much she missed me and how saddened she had been over the past couple of decades of her abandonment. Between enjoying this reacquaintance, and nervous jitters over seeing Boy, I actually was more than a little disappointed to have landed so quickly.

Boy was in a great mood and I immediately knew that this visit was the right decision. I had wavered so much on whether to postpone, but doubt and second guesses dissipated within the first five minutes. After arriving at his place, we had a brief walk around his neighborhood (including a stop into his "local"), I had a short nap, and we ventured out again for a comfort dinner. Movie night with the much long-awaited sofa snuggling and off to bed for a night of my waking up many times over, giggling to myself, "Running Violet is in Chi-ca-go-ooo, in Boy's be-e-e-ed, with no-o-o-o clothes on!". A luxurious and ever so tiny bit of a lascivious wake-up, and on to his Mom's house (where, if you must know, dear reader, is where it all began), for a truly enjoyable visit, with a satisfying amount of bantering the past and present to properly kick off the first full day.

Of course there are lots more details, but they are still swimming 'round in my head, and I am for the most part enjoying the process of unraveling one thought from another in this tangled heap. For once, my mind is not racing in its usual triple type-A, hypercompetitive, get-the-fuck-out-of-my-way-I'm-not-stopping-til-the-end mode, and I do not feel compelled to understand all of it, nor all at once. There is a warm glow connecting my heart with my mind and I am content to let understanding unfold at its own pace. Funny how it was not much like I had envisioned it would be--nor was it even what I had thought I wanted it to be--but I know it was good and right and true to what Boy and I both needed. Cannot wait for another visit and I am intrigued by where and how it may go. I am so damn lucky to have found my friend and am going to do whatever I can to make sure we don't screw it up again.