The Keystone Kops installed my port. You all think I’m kidding but I’m not. Port installation day was a horrendous comedy of errors, a battle of the egos, and a practice in chaos. I am lucky I got out of there without MRSA, and yes I know who to thank for the infection control, but I will get to that later.
For those of you unaware of this little known yet charming fact of cancer life, a port is an infusion device; a direct pipeline into your jugular so you don’t have to mess with finding a vein and multiple needle sticks every chemo appointment. Plus, chemo being poison and all, it tends to be a tad irritating on the vascular system, collapsing veins and/or turning them a lovely shade of black. In an outpatient surgery procedure, the port is placed just under your skin at least for me, on my upper chest, kinda at 11 o’clock as you look at me. If I were to wear a tank top you could see it. The port gives infusion nurses an easy target to drive the chemo nail in each week, enhancing direct delivery of chemicals into your pumping heart. Really I don’t mind needles, in fact I have been known to freak phlebotomists out by calmly watching their every step as they search for a vein, stick after stick after stick; but given that I was looking at about oh 14-15 months of bi-weekly infusions ahead me, I agreed with the Big Guy that the port was a good idea, especially given the vein collapse theory.
Before I talk further about the port, you need to venture yonder into my neurotic little noggin to establish the ground rules here for our new viewers. As those of you faithfully reading this blog know by now, I’m not like everyone else; a bit of an outlier in the anxiety/weird quirks department. For those of you new to this rodeo, suffice it to say this little buckaroo has a penchant for anxious wanderings out of the corral. While I’d prefer to frame it as being a “a pro health advocate,” my friends however affectionately (yet erroneously in my opinion) refer to me a germ phobe with a heaping spoonful of being a control freak mixed in. I am not a good patient, not because I whine or complain but because I helpfully point out things that worry me. These “things that worry me” could be anything from something my body is doing, like say the rate of my heartbeat (which once actually saved my life when Herceptin tried to kill me… just remember, all you have to do is reward bad behavior once,) to odd things that I have found in the toilet that came out of my body, to things that are happening around me that are making me feel alarmed. “Things happening around me” would include any of the subsets of actions that could present portals of entry to my body for staph, E coli, malaria, Ebola, head lice and/or the common cold.
Further enhancing the medical experience for all is that fact that I am an expert on cross contamination. Having worked in a major hospital for years, I’ve been schooled through years of required hospital training on infection control; I use my elbows to open doors, knuckles to punch elevator buttons, I keep my own pen for use never sharing with anyone. I wash my hands right after hopping off the treadmill, and make my kids wash hands as soon as we are in the door from school. You will find me merrily singing the happy birthday song three times through a scrubbing of my hands and oh so carefully avoiding touching the faucet or paper towel dispenser afterward. I don’t touch money that comes from sick cashiers in fact; I carefully choose my checkout lines, proactively assessing the health status of clerks before selecting my lane. And yes, I have been known to give up orchestra seats for a back row balcony seats simply because the patron behind me was coughing. A germ phobic, control freakish, pro health advocate, lil ole sweetheart I am.
Good ownership right? OK, let me say this in my defense, I got through 20 years of interviewing kids in one tiny room without getting chicken pox (which I never had as a kid.) But the crown jewel in my Queen of Cross Contamination Crown is the fact that I got through 15 months of chemo, with a whopping total of 3 white blood cells in my possession, without one cold, without a stomach flu, without a sniffle, despite my two young munchkins having all of the above during that time frame. No fevers and resulting hospital stays, no cancelling chemo, all thanks to my excellence in personal pro-health advocacy (and a sweet neighbor who came and washed my dishes when my kids were sick.)
So me, in a healthcare setting, having a procedure done, is a nightmare; not for me silly as I am the captain of my ship of course, but for those tending to my care. Shocking as it may be to believe, I can be a bit bossy, and have pissed off many a health care professional attempting a blood draw on me by helpfully pointing out that when they opened the door with their gloved hand that the glove was no longer sterile. It’s even worse with my kid’s care, as my own illness isn’t compromising my attentiveness; insisting on a new IV bag for Colton when one to be used was (Euww) held in the nurses teeth, and helpfully pointing out when Amelia was in the hospital with dehydration and they brought her the plastic coated paper which was taken from room to room for children to select their movies by placing their finger on the sheet to point, that it might set off a wave of an entire floor of Rotovirus, Just sayin’.
Back to the port.
Those of you without chemo brain might remember from the Chemo Brain blog that the whole port thing started out rough, with photographs being taken throughout the morning by a self appointed docu-drama director as I donned a shower cap and snot nose from bawling. But honest, the cancer train had started it’s derail south waaaaay before I even got to the hospital that day. I was called early that morning and told, oops, we are short-staffed, there may be a delay in your procedure. Given that chemo was supposed to start the next day, this presented a problem. “A delay” set me off into a catastrophic death spiral as I envisioned millions of mets escaping the tumor and taking up new residence in my bones as we spoke. There are no delays in chemo.
The hospital helpfully offered that however, I could come and wait, so I did. I figured that after I pointed out hospital code contamination violation number 42, I’d just wear ’em down and they would take me back. And I was right, wink wink. Upon arrival, I was told I would have a 6 hour wait, and then magically, after I pointed out the dust bunnies on the floor, and how the latex gloves had dropped out of the cardboard container on the wall and been put back in the box twice, I was wheeled back immediately.
Enter the Keystone Kops.
Being “short staffed” that day, the OR had called in helpers from various areas of the hospital, like say from billing and maintenance. Turf wars were clearly underway upon my arrival, and it was unfortunate that quite obviously, people had not taken note that a nurse I will call “Ed” was clearly more brilliantadepttenured and in charge. Ed clearly felt he was the King of the Hill yet, frustratingly, no one else did. Ed and I initially got off to a bad start when he grabbed my arm and screamed, “NOOOOOOO!!!!!” in a slow motion lurch, as I reached up to scratch at my nose. With that, I dissolved into tears, hating Ed and aligning with the anti-Ed gang mentality that was taking shape in the room. But just like that, the tides turned, and in an instant, Ed became the macaroni to my cheese when he yelled at another nurse for having hair hanging out of her shower cap, and at another regarding how she had scrubbed improperly (I bet she touched the faucet to turn it off.) Atta boy Ed, you can be the King of my Hill any day; just imagine how sterile we would keep it!
Okay back to the OR. It was chaos, I mean CHA-OS. Arguments ensued about who was to do what, and people were frantically trying to get a handle on the procedure, wanting to know who’s on first, and what’s on second? Who was on third at that point? I don’t know. I don’t think even Ed knew. A pecking order had not yet been firmly established and it was anomie. My anxiety and blood pressure climbed like a firework launched into the sky and let me tell you all, it did not feel the least bit festive.
Then, the bottom fell out., not with a thud, but with something much more sinister. Achoo.
It started when a 13-year-old surgeon walked in and tried to shake my unsterile hand (Ed nipped that in the bud) and announced to the staff that he usually did cardiac caths, and was not used to doing ports. And then….he sneezed. That sneeze was the tipping point for me, for it was then I began to realize that I was either sure to die if not from the procedure, from the MRSA afterward. My mind spiraled into circling the notion that if I got a cold, and could not start chemo as planned, I would die of metastatic cancer as well. It was a freaking Pow Wow; a room full of chiefs and the only Indian I could identify was the surgeon, who had yet to move out of his dorm after graduating yesterday.
And all I could think was, where the hell was docu-drama and her camera when I needed her to record this critical piece of evidence in my medical malpractice suit?
In the end the port was installed. And I left with a hockey puck buried in my chest, no MRSA, and a brand new place carved in my thankfully still beating heart for Ed. I loved him; for all that was Ed; for his yelling and dictatorship in that OR, for steering the ship when this lil cap’n couldn’t, for being this little indian’s chief. Ed, a man after my own germ phobic heart, the peanut butter to my jelly in the cross contamination game. I got out without contracting Ebola because of Ed, but because of Ed, I still have a startle reflex when I scratch my nose. I’ll take it, as I shouldn’t be touching my nose anyway, that’s how you get colds BTW.
If I thought the procedure was hell, I had no idea what was ahead for me. I thought it was over, it was just the beginning.
I failed to mention one other tiny detail earlier when discussing the breadth of my craziness.
Foreign bodies in my body creep me out.
I know right? No IUD for this chick, no Norplant, perhaps never a future saline pouch in my chest for this very reason. I don’t like the thought of ink under my skin, so nix any optional tats. Perhaps some other things are on that list, but we won’t go there and God forbid if I ever need an artificial knee or something. But the port was the mother of all foreign bodies as far as I was concerned because not only was it inside my body, I could see it inside my body. I mean, I guess I pictured a little somethin’ somethin’ tucked neatly under my skin, not a freaking hockey puck with a dome on it that you could see when you looked in the mirror; it felt and looked like one of the Coneheads was residing in my chest.
And if that wasn’t bad enough, no way, no how, never never never did it cross my mind ever that there would be this visible tube popping out my neck that I could touch and feel in my pulsing jugular vein. It creeped the bejeebers out of me and I don’t care how you slice it or how helpful it was, black veins would have been infinitely, INFINITELY less icky than this. It gives me the willies even now to think about that damn thing.
I think that was when I stopped looking in the mirror, not when the hair came out, not when the breast was gone but when the port showed up.
And thus began my 15 month affair with “Portia.” It was a love hate relationship; a long distance relationship as well, as I refused to touch her. Ok, I may have touched her a grand total of once, maybe once more by accident. But most days I just let the soap run down in the shower over her, figuring Marci, Chemo Nurse Extrodinaire would scrub a dub dub her when it was important. Every other week about an hour before chemo, I had to prepare this eight-inch square of Press N’ Seal with a big glob of Lidocaine in the middle, and then well duh, Press N’ Seal it to my chest; the trick was I had to do it all while carefully avoiding touching Portia. It was most unpleasant.
Marci is actually the one who coined the name Portia, as in “Lets see how old Portia is gonna do today,” or, “Portia is giving me trouble today.” This would be what Marci said when it clogged and wouldn’t flush, requiring the application of the medical equivalent of Draino, pushing saline in and pulling it out over and over till whatever the hold up was likely broke free and shot into my heart killing me, but I digress (twas a loooong fifteen months for that saintly woman.)
Cute as naming that little button o’ creepiness was, and even with how very Extraordinaire Marci was, I think personifying it gave it more power than it deserved. To be honest, it gave it more of a presence, like when the gang in Toy Story is left on the porch when Andy leaves for college, or when Jessie got left in the box as Emily drove off and we were all sobbing. Portia however was not a happy helpful friend like Woody, and try as Marci might to make it all light and fun, Portia and I refused to kiss and make up. Portia took over my left brain for a year or so. She was an unwelcome guest who, even bossier than her host, made all the rules. She let me know in no uncertain terms that I would not be sleeping on my stomach for the next year and a half. She dictated my fashion choices, letting me know that I would not be wearing anything other than a turtleneck, even in the summer. She refused to let me look in the mirror. She also clearly let me know that she was indeed the more attractive of us two, using her wily feminine powers to attract all eyes to her. People couldn’t help but ask, “What is that?” Portia actually engaged a barista one day, who, following Starbuck’s recipe for success in identifying with a customer, loudly yet cheerfully announced that she too had a port for diabetes, and here is your Mochiolatte M’am. “Where is my Mochiolatte?” Portia likely wondered. Shut up Portia, it’s not all about you.
But it was.
Okay, I guess it’s better than looking like a heroin addict from the tracks on your arms. But at least a barista wouldn’t identify loudly with that.
So for 15 months give or take, Portia and I co-habitated less than peacefully, like college roommates who so did not get along and decided to just stick it out through the year. I got numbed up every other week and took private glee as I watched as the lovely yet sinister hook-like chemo needle be driven into her. I will say that Portia made that part of chemo easy and painless and slightly gratifying in a neurotic personifying an inanimate object kinda way.
But on a more serious note, I had no idea the impact this little hunk of plastic would have on me. That this one small thing would turn out to be one of the hardest things about cancer for me. Most days still, I would tell you it was worse for me than hair loss. I was conscious of it in my body every one of the 648,000 minutes of chemo. Admittedly, part of the struggle belonged to my quirky brain, but a bigger part was about what it represented to me.
After five years, the thing I still remember most clearly about that port procedure day was lying on that gurney feeling such a profound loss of control, feeling so unable to keep myself safe, and in my head, over and over and over repeating the Dylan Thomas quote, “After the first death there is no other…..after the first death there is no other.”
In all the stops you will make on the cancer train, this is the first stop, the first death, for many of us. For me, it was the first inkling of how big this thing was and just how out of my control it would become. That how no matter what I had done, how many mammograms, how many false negative needle biopsies, how much I had waved my hands around saying “people, there is a lump here,” all of it to keep myself safe, in the end, I was unable to do just that; to keep myself free from harm. Strapped to a gurney with chaos around me, being told to hush, the loss of control hammered me. It was the final breath of my firm belief that if you do A, B, and C, then D will follow. It was the mutiney of this captain by cancer, the day I realized I had no choice but to leap off the plank with my hands tied behind my back, and into the tide that would carry me where it wanted.
In all my years of reading on PTSD and grief and trauma with breast cancer, not once have a seen a section on dealing with the emotional trauma of how dehumanizing it is to put Press N’ Seal on your body. Not once have I seen a section on how deeply humiliated you feel when you are made to walk half-naked through hallways on the way to an MRI, where then, in front of the room full of techs, you must disrobe and awkwardly lay on your stomach and hang your breasts through two holes in a plank. There is nothing in any book about how violating it feels having a breast written on in sharpie, and that the last time you see it in your life, it has a doctors intials on it. There is nothing in chapter 3 of any book that discusses the indignity of having our bodies being measured with trigonometry like a drafting project as we lay there naked, and get tattooed by nurses for radiation, especially when you are one who doesn’t like the thought of ink in your skin. There is nothing, nothing about the angst of a port sticking out of your body, or how impersonal it feels having your body lifted and shifted by nurses until you are lined up just right for radiation.
There is nothing in any book about how to come to terms with the death of control over your body and life.
But know this. Just because it is not said or written about, doesn’t make it less real. It does not make our feelings about many of these more ambiguous losses less valid, less deserving of mention. It does not make the trauma less valid, it does not make us whiners about small stuff. No one tells us these things about breast cancer. No one says, this too is a loss, this too is a death, maybe a small death, but a death; and this too takes a toll emotionally.
There will be a thousand deaths in cancer, and then a thousand more.
We must be mindful of tending to the power of the intangible and ambiguous to traumatize us. We must be kind to ourselves about our own personal makeup, and honor our human-ness and quirks and feelings. If it is important to you, it is important.
We will suffer many more deaths on the cancer journey. Some by things taken from us, and some by things given/done to us. There are no small things in cancer. There are no ridiculous things. People like to tell us not to sweat the small stuff, but there is no small stuff in cancer. There is no such thing as a small assault on our feelings/psyche.
Sometimes, the tiniest pebble in our shoe is the one that will make us most weary; indeed, the smallest of stones can derail a train.
I didn’t cry on the last day of radiation. I didn’t cry on the last day of chemo or on the day half of my breast was taken. I cried the day the port came out. There could be no relief, no finish line, until it was assuaged, until that first death was buried and grieved.
Only then did I realize how exhausting my attention to its heavy presence had been. It was as if I held my breath for 15 months.
It felt like a splinter in my foot finally sliding out, after the longest walk of my life.
“Anything that’s human is mentionable”
~ Mr. Rogers