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.”
“Oh.”
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 her mom, all while being yanked swiftly out of a movie theater by dad. I knew that even if that lump was relocated onto a slide at the path lab at Duke, it would continue to yell, “Cancer! Cancer!” all the way from way over yonder in 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. Being the neurotic 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.
Oh, princess. Another fantastic post. Cancerchicks unite! I too am a Crazy-Ass Patient, and while I’m not far enough out of the woods to start seeing new areas in which cancer has inhabited, I’m sure it will come. I had hoped that you were going to tell me that after 5 years, the lunacy and hypervigilance are gone, baby gone. Rats.
not gone but you do feel more like a princess after five years… 🙂
Oh my goodness…I am going to have everyone I know read this. Hopefully it will help explain to them a little bit of how my mind works. GREAT post!!! In the past 3 years, I have convinced myself I had ovarian cancer, colon cancer, a brain tumor (I have migraines) and now am playing with the idea I have “hip cancer”. As I said in my blog…this is my new normal and you know what…it is ok. Love your blog…thanks for visiting mine. I have already put you on my favorites list!!! GO CANCERCHICKS!!!!!!!
Thank you Kim welcome aboard and thanks for favoriting me 🙂 Most of all i am glad to hear this resonates with other survivors…
Lauren
I’ll go ahead and jump on the Crazy Patient train with you guys–I was convinced I had developed a super fast-acting form of cervical cancer 3 weeks after a clean PET scan. (it was a yeast infection. doh.)
wendy, ha sounds like the worrisome little spot where i am sure i have skin cancer on my leg currently…hop on board, next stop crazy town… loved your port poetics, sent the link to another friend at the pink underbelly who was beomoaning old portia yesterday… but still I wish i had that daisy idea back then….
I must say, the daisy was a pretty awesome idea–until I had to clean the make-up away, because that required, you know…touching it. (aaiiieee!)
(and seriously–I’m so glad to have found you guys. Thanks for sending her over! It’s been awesome.)
oooh wendy that whole touching thing, the willies…. ick E….next time just leave it till you go in for chemo and make the nurse clean it….please lean on us, we been there girl and you are almost done!
Beautiful, just beautiful. Of course I can totally relate to this and this line is especially meaningful to me.
“When you are always looking for the bad coming at ya, you tend to overlook the good.”
Thank you,
Katie
thank you katie and it is so true, optimism is a skill in all this…you might like luckygrl post then…
lauren
Oh my, so funny. I am going to think about this post at my oncology appointment today. Reading this today was perfect timing. Thank you.
thank you nancy, glad I made chemo easier at least for a day 🙂
[…] alone. It is a clear case of the Breast Cancer glasses skewing everything again. So when I read a marvellous post which conveyed the fears of one of my blogging pals, I totally related to what she was saying. […]
Oh Philippa… thank you so much for the nod back to me but we all deal with thigh cancer now don’t we? Be kind to ourselves, and breathe….
I’m grateful to Feisty Blue Gecko for referencing your post this morning.
It’s priceless, right down to spitting out your news about the “lump” right as your oncologist had her hand on the doorknob.
What a terrific post – thanks so much,
Jody
thank you Jody, I’m not sure Dr. Wilke thought the moment as priceless…but oh well 🙂
[…] When I started down this crazy path, unwillingly and maybe kicking and screaming, I was able to live my life between appointments. Six years ago, I lived in three-week increments. Now, I’m living a year at a time, with only occasional panic attacks about a new pain or a fear of thigh cancer. […]
[…] “toe cancer” following some sudden twinge. This was borrowed from Lauren’s experience of “thigh cancer”. I can share a fear in a way which makes people laugh instead of adopting an embarrassed or […]
A cancerchick for 20 years and still get at least one new cancer a year! Presently I have STS (soft tissue sarcoma ) of the thigh (the pea). Waiting to see my poor GP on Tuesday, but he is a patient ,accommodating physician thank goodness!
Joan, would you Please report on how that appointment/diagnosis went. Hope you are well.
I came across this when I had googled “symptoms” for my thigh, the irony. However, reading it I was almost relieved! Someone else who worried, poked, and examed things until they had convinced themselves of the worst case scenario. At 1:15am, when your brain is running wild with awful thoughts of what any bump, itch, spot, etc on your body could be..instead of finding another medical site that helped confirm my worst fears, I found this. Found a piece of writing that left me thinking ” I’m not alone” in this we know it’s crazy but can’t help it way of thinking.
Rachel
You are not alone! We all go there, whether most admit it or not 🙂 You might like the piece titled “Unscrewed” as it speaks to the same issue.
Thanks for your comment!
Lauren
I know this is an old post but I wanted to say thank you. I needed this tonight. My PTSD is through the roof and today I think I self diagnosed myself with six different cancers. I need to stay away from Dr. Google 🙂 Thanks for making me not feel so alone.
It’s like I could have written this. I actually do have a tiny little lump in my leg…well, you know. Someone once told me that she had breast cancer two years ago and that she has trouble remembering that she ever had it. Who are these people? I think about it all the time. (I, too, am five years out). Just hearing you say these things I’ve been feeling makes me feel not so alone and much less crazy.
Thank You Pamela…this blog, more than any of the others, has resonated with many…after ten years I can tell you there are days I don’t think about it…but you are not alone, and not crazy…we all think these thoughts…we all know it’s stealth nature…you might also enjoy the blog I wrote called unscrewed…same thing… 🙂
Wow….I stumbled upon this while frantically googling symptoms for “shin cancer”….although I have never actually been diagnosed with cancer, I have awful health anxiety after doctors put me through 2 months of “maybe” having cancer while they did test after test. They finally decided to end the long line of tests with a biopsy…benign bone tumor….and although that should have been the end of it, it wasnt…it ruined me. So, now here I sit tonight, for the 5th night in a row… 4 years after “maybe” having cancer, googling symptoms of “shin” cancer. I found a hard pea sized bump on my shin. Kinda soft, but mostly hard, and I have been poking it and pushing it to the point where it now hurts. And I am convinced this is it…a malignant tumor. Write out a will and say silent goodbyes in your head to your babies as you watch them sleep, convinced. I can hardly handle this! I am so afraid to see my GP, although she is great and knows how nutty I am…I am always afraid she will one day confirm my biggest fears. Ughhhhh. I wish I could brush it off like “normal” people. But what’s normal anyway? Thank you so much for this post. I feel sort of silly as you have actually had more than “maybe” cancer. But I could relate to so much of what you wrote. ♡♡ I am going to go have a drink and try to forget about my shin for a bit. Night!
Amy Thank you so much for this kind note. I think “a scare” is just as much “cancer” in our minds, at least enough to trigger these kinds of responses. The key is in knowing it’s there, and honoring it and not feeling like a crazy woman when it happens. 🙂 Maybe = Cancer in terms of the impact, thank you for sharing…Hope you enjoyed the drink!
Ironically, I too stumbled across this blog as I was googling thigh cancer of all things. I had a lumpectomy and radiation in March of this year for breast cancer. Upon going in for a check up and mammogram in September they told me I was all clear and good to go for a whole year. I was like really?? Could this possibly be true I am cancer free? However as you know, those words have not left me convinced. So I still go through every day with the anxiety that I am really not “cancer free” and at any moment it is going to rear its ugly head in one form or another. However, I feel so blessed to have come across your blog and plan to read previous excerpts to get caught up. Thank you for sharing your thoughts as I found true solace in your words…