When you take a person who is already slightly more neurotic than the average bear, and you add a dose of breast cancer, you find yourself with a girl who thinks she has thigh cancer.
Let me explain, I’m not talking about a bone metastasis, I am talking about a pea sized little bump, a nodule if you will on my upper thigh, yep in the fat and no it is not cellulite, thanks for asking. When I first found it I spent the entire evening rolling it between my fingers. That night tipped off a month of worrying about it quite incessantly, but I just felt kinda ridiculous calling the Big Guy (my oncologist) to say, “Um…there’s this thingy on my leg.” Especially on the tails of having just called my gynecologist to (gasp!) report “My periods stopped and did I have ovarian cancer?!!” only to be told, “Um Lauren, it’s just menopause sweetie.”
Next up for the not so pleasant picnic that is seeing this little bear for cancer rechecks was Dr. Wilke, my breast surgeon. Now, I love Dr. Wilke to bits. Outside of her magical skill to scoop out about a half a breast and leave behind both pristine margins and something that still kinda sorta resembled a breast, I adore her ability to call it like it is with me, to tell me to shut up when I malingered, and her willingness to set me up on dates with other surgeons…but I digress. So after we had chatted about why I really would not want to date a surgeon after all because they are all so cocky, and after I had showcased her handiwork for the medical students (Duke is a teaching hospital,) she mistakenly thought she was home free, already having checked off that Level 1-15 minute office visit. Oh, but she was so so wrong; that level 1 office visit was just ramping up to a level 4 and she never even saw it coming.
Hand on the doorknob, falsely deluded into thinking “that was easy,” my mouth opened and she froze. Her dreams of staying on schedule that morning evaporated. “Oh and one more thing,” I said, trying to be all ho-hum and BTW and all, “I found this itty bitty little knot on my thigh.” Despite it being winter, I had helpfully worn shorts just for the occasion of showcasing said knot on today’s visit. She immediately grabbed the pea and began thoughtfully and quietly moving it around with her fingertips. As she did this, I, with as steady a voice as I could muster given the gravity of the situation said, “Dr. Wilke, do I have thigh cancer?” Inches from my face, looking down and still pinching at the pea, she looked up and locked eyes with me for what seemed hours, I think secretly gauging, “Is she for real?” Then she laughed and said,“For God sake quit it, no you don’t have thigh cancer; it’s just a knot from where you gave yourself neupogen shots.” I imagine this is what is referred to as “a teachable moment” for the medical students, under the subcategory of what to do when you have a crazy ass patient who is a hypochondriac.
They are easy to spot cause they wear shorts on a 22 degree day.
Ignoring the festivity of her demeanor, I continued to pester her like I used to about the margins on my neoplasm, until she finally sighed and said, “Lauren, do you want me to take it out?” “Hmmm,” I said thoughtfully, as Level 3 minutes ticked by into Level 4. Maybe taking it out would work in this case, at least it would call to a halt the pesky little habit I had developed of rubbing it like one does a worry stone. Just as your tongue keeps finding the hole where the filling came out, I just couldn’t leave it alone.
But I knew the inner workings of my anxiety well enough to know that out of sight would sooo not mean out of mind. Taking it out wasn’t gonna fix it cause that little nodule would still holler out to me like a tantruming tot does for mom while being yanked swiftly out of a movie theater by dad. I knew that even if relocated onto a slide at the path lab at Duke, it would continue to yell, “Cancer! Cancer!” all the way from the Bull City. No, what ailed me was far deeper than a couple of layers of subcutaneous fat and would persist long after she dropped that little marble o’cancer into the specimen jar. And besides, the scar alone would still just flash like freaking neon. If only it was that easy; cut it off and off you go, but I knew there would be no, “off you go” for this chick, just going off further….the deep end that is. Like the princess that I am, layers and layers of scar tissue could pile up, and I’d still feel the pea.
In the end, as I tried desperately to mimic the frivolity of the room to mask my loose hold on reality, I told Dr. Wilke, “Nah, I’ll just keep it like a little good luck charm, he-he.” But honest, I knew that if I started down that slippery slope I’d now be after five years, minus a chunk of my thigh, the knuckle of my index finger and an entire top of a foot. And God knows what they would have done about the divot in my shoulder where cancer was currently nibbling away at my bones. No, taking it off would successfully eliminate the overt little cancer flag waving at full mast, but would ignore the fact that covertly, the source of the river still bubbled freely. Out of sight in this case, at least for this little bear, would not mean out of mind.
What is this penchant we Cancerchicks have for finding these things in our bodies? For walking our little fingertips all over our bodies like Google spiders to find these lil abnormalities that we feel surely announce for cancer like Jack Nicholson’s face in the door, “I’m ba-ack.” We whisper to each other endlessly about our weird body things, afraid that speaking it aloud will give it life. These discussions are often hushed and secret, like when a cancer friend recently confided in me about her fingernails being ridged and her worry that it “meant something.” No explanation needed here as to what “meant something” meant, for when you are a cancerchick you know darn well what it means; it means cancer is eating your bones causing a vitamin deficiency that shows up in your fingernails. And I am here to tell you, in talking with other breast cancer survivors, I find that incidents of thigh cancer are alarmingly rampant.
We psychologists call this Post Traumatic Stress Disorder or more specifically, the workings of one of its star symptoms, hypervigilance. Hypervigilance is the increased state of arousal we experience after trauma where we find ourselves continually scanning the horizon for more oncoming problems/attacks. DSM criteria describes this as “intense psychological distress at exposure to internal or external cues that symbolize or resemble an aspect of the traumatic event.” And in case you don’t get it, well duh there are glaring similarities between breast cancer and thigh cancer. Additionally, what is known as an “exaggerated startle response” often buddies up with hypervigilance on the PTSD spectrum. This grand little feature shows up as in, “OH MY GOD! Is that a bump?!!! I’m going to die! Wait, no it’s a mosquito bite.”
Like crime victims checking every room in the house before sleep, we cancerchicks scan our bodies for trouble in the form of lumps and bumps and new abnormalities and unusual symptoms both real and imagined. Every vomit is stomach cancer. Every cough is lung cancer, forgetfulness is brain metastasis, and leg pain is a bone metastasis. Every time we hear of how another survivor found her recurrence it remains etched in our brain as a new field, (likely that we had never thought of before but thank god we now know) to scan. As a result of the Monica episode (see swimmers blog) and an observation I had on a horrendous first date to a BODIES exhibit (which I wish I could purge along with the guy from my mind’s eye) I will forever run my fingers along my collar bones in an absent-minded way. Elizabeth Edwards spoke of the “crack” she heard in a rib heralding the onset of bone metastasis, and I swear every single time my bones crack now, I go there. I do the same thing with Scout the Wonderdog too, finding myself feeling along his scar where the leg was for bumps. One time I was convinced he had a brain tumor as one eye wasn’t shutting right; it turned out to be a bee sting (sorry Dr. Cassidy, but what did I know?)
There hasn’t been a single night since chemo that I haven’t felt pain in my scooped out breast when I wake up to pee (as I sleep on my left side and pee a lot.) The number of mini debates which have taken place in my lil head in the tiny stretch of carpet that is the ten steps from my bed to the bathroom is epic; all of them mental wrestling matches between “It’s back” and “You just got rechecks last week Lauren, it’s gone.” But always first, in that groggy sleepy state, I go there. Sometimes I wish I could get through just one day without thinking it’s back. Without looking for it. Although after five years, it only happens about once a day, okay maybe twice if you count nighttime, three if I am tired, but a lot less than all day long like it did in the first years out of the treatment gates.
What has changed however is my ability to laugh at the sometimes ridiculousness of the quest (note I didn’t say always, just sometimes.) Perhaps it is a reflection of the people I have surrounded myself with; friends who have made it okay to voice the neurotic wandering, and who embrace it as kinda cute in its own crazy little way. It takes a special kind of person to be friends with a cancer survivor and joke about the dreaded foot cancer, all the while understanding and holding dear the undercurrent of fear that bubbles just below the giggle.
Letting it out and being heard is indeed salve for the soul. In treating children for sexual abuse, one of the best parts of my job is when parents trust me and feel it’s okay to call me up years later, to chat with me about their anxiety about some new weird behavior their kid is demonstrating. This is hypervigilance at work too, the parent scanning the horizon for anything that may be a symptom of the sexual abuse trauma rearing it’s head again. Just as kindly as Dr. Wilke did with me, I say, “It’s okay this is just how teenagers act,” or, “I really just think this is just a quirky kid thing.” While I do get that my words probably do as much to allay fear as Dr. W. cutting out the pea would have done for me, talking helps to know things are normal. Knowing that this state of hyperarousal is normal (and will pass) helps too. The relieved exhale on the other end of the line reveals this truth, get it out, talk about it, set it free and move on. It is good to share our anxiety about recurrence with our friends and our doctors, it is somehow diminished that way, somehow deflated. And indeed, better still when those who we share it with don’t laugh when we need them not to laugh, laugh when we need them to, and make us laugh even when we don’t want to; knowing us well enough to know the difference.
But you know girlfriend, even though checking ourselves is a good thing and proactive you need to keep in mind that sometimes a cigar is just a cigar. Once I was working with a trainer in an attempt to shed the steroid fat, my arm hurt and I was breathing funny. I remember trying to hide my panic, as I said, “Why does it hurt!? Why can’t I breathe right!?” and she said, “Cause it’s exercise silly.” Oh. We forget that even though we had cancer, we are just like everyone else, we will get sick and have freaky things happen as we age. Odd things will come out of our bodies from time to time, and our bones will creak and crack for no apparent reason. We will go through menopause and it doesn’t mean we have ovarian cancer. Our bodies will age with the aches and pains of “Ahtha- rightus” (as Frances says) and it doesn’t mean we have bone cancer. Our arm may hurt, and sure it could be something lymph related, but it is more likely a sign that our free weight work on our bat wings is doing its thing. But a little vigilance, given our history isn’t all bad. A little. Just don’t get all hyper to where it disrupts your ability to enjoy life. When you are always looking for the bad coming at ya, you tend to overlook the good.
I have a friend who is self admitted worrywart, which is a nice way of saying she is sooooo freaking OCD. She was telling me one day how she always used to worry about the iron being left on at her house. She said she would go back home again and again to see that it was turned off, and even bought an iron that had an auto turn off so she could rest a little more assured (notta). She explained to me,“You know Lauren, in the end, after you just go back again and again, you reach the point when you know it is off; you wake up one day and just don’t need to go back anymore.” I think this is what I would professionally call a saturation point, (aka thigh cancer fatigue.)
That is how PTSD therapy work is still done in many clinical settings; telling the story over and over again until you desensitize it. Until telling it becomes less traumatic and more rote. Until telling it becomes a chore and boring. We go back again and again to check that iron until we are satisfied and saturated. That is how the fear of recurrence/metastasis works too, after five years of just going there we don’t have to go there, at least not as often anymore. We will make the journey to the land of ”it’s back,” again and again until finally, the worry and anxiety spent going there exceeds the cost for peace of mind. Perhaps as the years pass, we expect less and less that it will show up again; we start to believe that the pea could be, no, indeed is, just a pea. And princess, you finally sleep, pea or no pea; you are finally able to rest.
Strike while the iron is hot yes, but when it has cooled, put it away.