That hospital smell. Yuk.
It’s been a while since I’ve smelled that familiar and powerful smell. Yet as soon as I walked through the sliding glass doors for my CT scan, the smell of sickness, helplessness, confusion, fear, uncertainty, and anxiety flooded my senses. I’m back at the hospital for a scan of my chest and abdomen, to peer into the inner workings of this body of mine to determine if that wily cancer beast is setting up shop again.
As much as I hate being here, smelling that hospital smell, I’m strangely comfortable here. Although I haven’t had my all-important cup of coffee or one bite of breakfast, and although this is the last thing I want to be doing this morning, I’m not too grumpy. I know exactly where to park to get me closest to the Outpatient Imaging area. I proceed effortlessly to the hospital registration desk, the payment cubicle, and the Imaging reception area. The ubiquitous white ID bracelet circles my wrist like an old friend slipping her hand into mine. I recognize some familiar faces. There’s the kindly, grandfatherly volunteer who guides lost patients, so eager and proud in his dapper red vest and jaunty bow tie. There’s Christy the phlebotomist who remembered that I have young kids, and asked how they’re doing. There’s Mary the nurse who took pity on me when this cancer “journey” first began in May 2010 and I was in the imaging area all day for tests. She took pity on me and presented Amy and me with a pink Astros jersey, just in time for Mother’s Day. Another familiar face: Lily, who was my nurse in the OR during one of the many surgeries to try to contain the infection and clean up the swath of destruction it left in its wake. I first wrote about her a while back, and was tickled to see her smiling face today at Methodist. Lily is a breast cancer survivor herself, and she showed Amy and me the scars from her mastectomy years ago. Choosing to forego reconstruction, she put her cancer in the past and bore her horizontal scars with a quiet dignity and strength that often pops into my head. Imagine my delight when I see Lily ‘s face on a poster announcing her as the recipient of the 2011 Care Award. Well done, Lily, and well deserved.
Of the 12 others in Outpatient Imaging Waiting A, I’m the only one without an AARP membership. One woman is in her house coat, napping in her wheelchair. One is reading a large-print edition Agatha Christie novel. I’d be willing to bet I’m also the only one who packed kids’ lunches and juggled two different school drop-offs with my early morning appointment. Such is life as a “young” cancer patient.
I’m well prepared for my visit today, and look like a walking Apple ad with my iPhone, iPad, and iPod. The phone is the constant companion every mother of dependent children during school hours. The iPad is to distract and entertain, and the iPod is vital to block out the blare of the morning news show coming from the hanging TV. Today it’s Concerto for Violin and Orchestra No. 4 in D Major. Mozart reminds me to stay calm, don’t focus too much on the germ breeding-ground that is a hospital. Those of us who’ve contracted strange hard-to-treat infections after surgery tend to be on edge in the belly of the beast.
All set up with my personal electronic devices, I wait to be summoned to the back rooms of the imaging area. This is not my first rodeo, so I know what to expect: I’ll get an IV inserted in the crook of my arm (always a pleasure since my veins are so tapped out and reclusive after all this mess), then I’ll have to drink two big cups of gross-tasting liquid contrast that somehow goes down my gullet and lights up my belly for the abdominal scan.
It is not tasty.
Both times I’ve had an abdominal scan and had to drink the non-tasty drinks, I’ve been the only person in the entire waiting area to be served a beverage. The other patients waiting for their scans always stare, perhaps wondering why I’m so special as to get not one, but two special drinks.
I have one hour in which to drink this vile stuff, but I chug it down as fast as I can to get it over with. Christy, my phlebotomist/comedienne, quipped that if I had come after 3 pm she would have spiked my drinks for me.
After I’ve ingested all the non-tasty drinks and they’ve had time to light me up from the inside, I’m called back for my scan. Of course it’s freezing in the scan room, and because I’ve just chugged a 40 of cold nastiness, I’m a bit chilly. Christy makes my day by giving me a warmed blanket, and tells me to lie on the narrow “bed” of the CT scan machine. Once covered, she tells me to pull my jeans down to my knees — under the blanket — so the zipper and button don’t interfere with the scan. After drinking those awful drinks and enduring yet another needle stick, I’m not going to do anything to mess up this scan.
The machine starts clicking and whirring, and Christy and Lucas the technician tell me to raise my arms above my head, stretching them out as much as I can with the IV inserted. I do as I’m told, and Christy and Lucas leave the room. I’m all alone, except for the chugging of the machine and the computerized voice that tells me to breathe in, hold my breath, then breathe. This goes on for several cycles, then Christy comes back in to push the contrast dye into my IV for the chest CT scan. While this isn’t nearly as unpleasant as drinking the yucky drinks, it has the strange side effect of presenting a gross, warm sensation that is reminiscent of wetting your pants. Thankfully, this side effect was explained to me the first time I had the scan, so I didn’t panic.
It’s a weird feeling to actually feel something going into your veins. For this IV, I literally felt the needle entering my vein, and am happy to report that after all the needle sticks over the last 20 months, I’m not nearly as freaked out by this as I used to be. I don’t like it, but I don’t get sweaty palms over it anymore. I also felt the contrast push as it entered my vein, and I could feel it as it coursed through my bloodstream. Strange, unpleasant, and draining. I haven’t seen any clinical evidence to support this, but this whole experience wears me out, big time.
After the contrast spreads throughout its intended path, the computerized voice tells me to breathe in, hold, and breathe out a few more times, and then I’m done. By this time, my blanket is no longer toasty warm, and I’m more than ready to leave. Christy comes back in to remove my IV, and I’m all done. I feel a little woogity from all the junk that’s been injected into and ingested by my body and from the fact that it’s now getting close to lunchtime and I haven’t had a sip of coffee or a bite of breakfast. No matter, I’m done. I’m outta there, blowing off the stink of the hospital as fast as I can.
But here’s the rub, people: the fasting, the absence of coffee, the disruption of my morning routine, the sharp stab of the IV, the gross drinks, and the unpleasantness of the IV contrast are the easy part. Now, the waiting begins. Waiting to hear what shows up on those scans. Now that I’m well acquainted with my fellow cancer-chicks in the blogosphere, I know a lot more about breast cancer and recurrence than I used to. I’ve left the security of “we caught it early and think we got it all” for the real world of recurrence. Getting a glimpse into the harsh realities of metastatic breast cancer is a sobering experience. Through intrepid bloggers like the beloved Rachel and the eminently wise Susan and the witty Sarah (who had ovarian, not breast, cancer), I’ve learned first-hand that while being diagnosed with cancer, especially at a young-ish age, is scary, the really scary part is recurrence. We may think we’ve dodged a bullet or done our time or earned our freedom or whatever metaphor applies, but the truth is, it’s random and it’s scary. The periodic scans that make up the fabric of a cancer patient’s life are unnerving. There’s a delicate balance between wanting to be normal and being realistic. We hold our breath for the “all clear” while awaiting the blow that once again knocks the wind out of us and shatters our fragile peace.
If it’s not over until the fat lady sings, I would like to know what time she’s scheduled to take the stage. What’s that — there is no schedule? The fat lady sings when she’s good & ready and not one minute before? She is a diva.
The idea of all of “this” being over is a recurring one. By “this” of course I mean cancer and all its dangling, hangey-on-y ways of lingering and permeating myriads aspects of life. I was reminded of this (because cancer and its many tentacles are never far from my mind), while reading one of my new blog friend’s blogs. His wife just had a mastectomy in northern California, and he posted on his blog to tell all of her friends & followers that the surgery was over. He actually used the phrase “it’s all over” and then chuckled at and corrected himself, knowing full good and well that they have miles to go before they sleep, as Robert Frost so eloquently wrote in “Stopping by Woods on a Snowy Evening.”
Oh, how I love that poem. Robert Frost was a total stud. The imagery he creates, seemingly effortlessly, resonates to this day. I’m totally in love with the image in my head of his horse, which he carefully crafts with such an economy of words. I can see his horse’s big, gentle eyes, beseeching his master and wondering what in tarnation the pair of them are doing hanging out in the woods on a cold, dark night. I can almost hear his harness bells’ jingle, and I’m swooning over the phrase “easy wind and downy flake.” Love it.
While some first-rate poetry is a nice distraction, the subject remains. The idea of “being done,” or “it being over,” doesn’t really apply to cancer. As I pondered Paul’s blog post I realized this truism, and even though I’m a rookie in the “cancer journey” I’ve learned a lot and I know this to be true: it’s never over.
Here’s the thing: the “cancer journey” is long. It used to be the road less traveled, to quote Mr Frost again, yet nowadays is more and more common. Too common, as every day the numbers of people diagnosed continue to grow. For breast cancer alone, the chances of getting it have risen from 1 in 20 in 1964 to 1 in 8 today. In less than 50 years, our chances of contracting this damned disease have leapfrogged considerably. Which means more and more people will find themselves on a “cancer journey,” and I wouldn’t be surprised if those numbers continue rising.
Another things I’ve learned on my “cancer journey” is that someone keeps moving the finish line. I’ve only been at this for 10 months, yet have seen my finish line recede, sidewind, and fade into the distance. It starts even before diagnosis, with the testing that’s done to determine if we do indeed have a problem. Get through those tests, which in my case were a mammogram, an ultrasound or two, and a couple of biopsies. Then there’s the actual diagnosis, and getting through that becomes an emotional obstacle course. Following the diagnosis are lots of research, soul-searching, and decisions. But even when those are through, the real work is only just beginning. After the big decisions come still more testing (MRI, CT scan, PET scan, blood work, another biopsy), and that’s just to get to the point of having surgery. Get through surgery, then through recovery, and just when I think I may be getting “there” I realize that even after recovery, I gotta learn about re-living, which is kinda different when “normal” has flown the coop and there’s a new status quo involved. You might think that finding the new normal would be the end, but guess what? now there’s the maintenance and screening. If you’re the kind of person who makes a list and takes the necessary steps to reach the conclusion, you’re screwed, because there is no end. I can’t even see the goalposts anymore.
I’ve learned this much on my “cancer journey.” I’m trying to stop looking for the finish line, to avoid squinting for the goalposts, somewhere off in the distance. Since it’s never truly over, I’m gonna just keep on truckin.’
I’ve been a pretty good girl this year. I’ve smiled at fussy babies in checkout lines at HEB. I did my time at the grade-school class parties (not my scene, to say the least). I called the collection agency back — yes, I really did — when they left me a message saying I owed money on a past-due hospital bill that my insurance company says has been paid. I donated nearly-new clothes & home goods to charities multiple times. I helped out with the school fundraiser, even though I really, really, didn’t want to. I’ve said please and thank you and bring my own bags. I was a big girl and good sport about all the trips and baseball games I missed this past summer.
And while we’re on the topic of this past summer, dear Santa, do ya remember all the hell I went through? It all started on April 27, 2010, when I was diagnosed with breast cancer. Talk about an “aha” moment. The timeline quickly unfolded like this: the rest of April and first part of May were consumed with tests, tests, and more tests: BRAC analysis, CT scans, x-rays, PET scan, bone scans and MRI. In case that’s not enough acronyms for ya, there was also the L-Dex and then the genomic typing of ER/PR positive and HER2 negative. More injections and blood draws than my poor left arm’s veins could keep up with (literally; there’s a permanent knot in the big vein). Countless appointments with the breast surgeon (Dr Dempsey, who is on the “nice” list) and plastic surgeon (Dr S, who may be on the naughty list), and 3 different oncologists.
Meanwhile, there was research to be done and crushing decisions to be made as I prepared for surgery. The phrase “life and death” took on a whole new meaning, sweet Santa. There’s a strange juxtaposition between packing school lunches and signing field trip permission slips while also filling out my medical directive and living will. I learned pretty fast how to act normal when everything around me had been turned upside down. I think, dear Santa, I also did a pretty good job of adjusting and adapting to the new normal. I think, fat man, I’m still doing a damn fine job of that. One quick look at my profile tells you that there most definitely is a new normal around here.
Santa baby, I was a good girl after the double mastectomy and the lymph node removal that left me battle-scarred and weary. I was an especially good girl in the face of the plethora of prescription drugs I could have used & abused. I was a diligent girl when it came to choosing green drink over Diet Coke, all-natural hormone-free yogurt over Blue Bell.
Santa, I was a brave and good girl when the nasty infection set up shop in my still-raw chest wall. I endured the 103-degree fevers, 22 days in the hospital, multiple tissue excisions and untold poking & prodding without much complaint. I missed the comforts of home, my dogs & my kids more than words can say, but I only cried twice. And even then, it was when no one else was around to see.
We don’t even need to recount the 18 days during which I was attached to the wound vac 24-7. I would really like, dear Santa, to permanently erase that memory from my grey matter, por favor. But I would like to remind you that I was a trouper during the home health days, and all those hours that were consumed with wound care and the administration of IV antibiotics. And while I’m at it, can I get a little shout-out for not killing Dr S, even though he probably deserved it?
Oh Santa, I do crave some credit for all the antibiotics I’ve endured — and continue to endure. From the Vancomycin to Cefapim, from the Cipro to the Zyvox, from the Biaxin to the Bactrim and Minocycline. Those last two will be part of my daily routine for a few months yet, but I’m already looking forward to the day in which I don’t have them on my kitchen counter anymore.
So Santa, how about we make a deal? I’ll set out all the milk & cookies you want in exchange for one little thing. All I want for Christmas is to have it easy for awhile.
When you think of a breast cancer survivor, what comes to mind? A granny all decked out in pink? A joyful gal in a ball cap crossing the finish line at the Race for the Cure? How about a sad sack sitting in yet another hospital waiting for yet another test? You might think that surviving the diagnosis, the surgery, the treatment(s) and any subsequent complications means you’re done, right? Wrong. You’re wrong. It doesn’t end there, and there’s no prize for getting through it.
Welcome to the next phase of survivorship: the constant vigilance required to ensure the cancer isn’t making a repeat appearance. Although I’m just getting started, I’ll quit my bitching just long enough to say I am grateful that my doctors are vigilant, that I have good insurance, and that I can get the majority of my tests done 10 minutes from home. That said, it’s still a giant suck-fest.
Today’s test is a CT scan to check 2 little spots–1 on my liver & another on one of my lungs. These little gems were uncovered during a CT scan the last time I was hospitalized, in mid-August. No one seems too worried about them because they are so small, but once you’ve had cancer, you learn the hard way that there is no sure thing. There is no guarantee. A spot is a spot, no matter how small, and a spot is never a good thing once you’ve had The Big “C.”
Hence today’s CT scan. I’ve never had an abdominal scan before, so I didn’t know that in addition to the fasting and IV contrast (where they inject dye into my veins), I also get to drink the dye. So instead of my daily cup of coffee (which, by the way is the #1 reason I get out of bed each morning), I had to gulp down two big cups of Sprite mixed with contrast dye. No ice. No vodka. That’s just mean. I don’t like Sprite on a good day, and by good day I mean one in which the Sprite is mixed with vodka. Lots and lots of vodka. The only good thing about drinking these 2 vile cups is that I could have burped loud enough to seriously impress a room full of middle-school boys. Too bad the waiting room was full of old people, who either wouldn’t hear it or would think it was rude to launch into a Buddy-the-Elf style burp.
After the Sprite-fest was the IV contrast. Ugh. I really don’t like needles, but have had enough of them in the last 6 months, whether IVs or blood draws or shots or port flushes, to kinda get used to them, but I still don’t like them. My veins on the left side have been used so much that they rebel. They act nice at first, so right after the big stick, to pierce the skin and enter the vein, it seems as if it’s going to work, but just as the nurse is threading the needle higher into the vein, that vein says, nope, no farther. The nurse typically digs around a while before giving up and moving to the other arm.
Cue the complication: because my infection was on the right side, and because I’m working hard to avoid lymphedema (swelling from surgery or trauma that can be permanent and that is seriously contraindicated with tennis), I’m supposed to avoid getting my blood pressure taken or blood drawn from my right side. But that’s my good side! That vein hasn’t been used & abused so much that it pouts and throws a tantrum like a toddler who’s way past nap time.
Luckily, the nurse was very nice. She listened to my long, drawn-out story about my bad luck on the right side and bad veins on the left, and rolled up her sleeves to try and make it work. Work, it did, with just a little big of digging on her part. After the IV it was time to lay down on the CT machine. No big whoop. No trick there, just suck it up because it’s hard plastic instead of Tempurpedic. And then the fun part: injecting the contrast. If you’ve never experienced this, let me be the first to tell you that if you have to go through this, remember: as the dye enters your vein and travels throughout your body, you will feel a warm, wet sensation. Don’t panic and think you’ve wet your pants. Don’t worry too much about it because before you know it, the “did I wet my pants?” sensation is replaced by a crushing headache and the feeling of wanting to simultaneously vomit and pass out. It’s also ok to want to cry for yo mama. The good thing (!) about all this is, it doesn’t last very long. So before you know it, the “wet pants, gonna puke, but wait I might pass out” feeling is over, the scan is done, the nurse yanks the needle out from your vein, and you are free to go. Come back in three months, though, to do it all over again.
So the survivor vigilance is a lot of work. It’s hard enough to live with a monkey on one’s back, wondering if/when the cancer is going to recur. It’s hard enough to wonder, am I doing enough? Asking the right questions? Worrying about the right issues? Researching the right stuff? It’s hard enough to put complete trust, and thereby one’s life, in the doctors’ hands. They are human, ya know. As schooled and trained and rich in experience and purpose as they are, they’re still human. So as much as I do trust them, there’s always that little voice in the back of my head wondering, what if they’re wrong? What if they made a mistake?
Nobody said it would be easy, but I really didn’t think it would be this hard. That’s why I have this cute little pillow on my bed, to remind me that yes it’s hard, but dadgummit, I am indeed a survivor. Period.