That hospital smell

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.

I had hoped the pink labels on the cups would provide a clue as to exactly what this concoction is, but alas, that hope was not to be recognized.

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.

 


BC claims a two-fer

The icy grip of death got a two-fer yesterday. The world lost not one but two beautiful souls and because of this vicoious disease known as breast cancer, two important voices in the blog-o-sphere are forever silenced. Rachel Moro Cheetham, better known as Rach from the Cancer Culture Chronicles, and Susan Niebur of toddlerplanet both died yesterday. Rachel was the one who enlightened me to the appalling statistics that exist in the financials of the Susan G. Komen “For the Cure” organization [emphasis mine]. Rach is gone, but her tell-all pie chart will live on. Susan was an astrophysicist with NASA and mom to a 4- and 6-year-old boy who fought inflammatory breast cancer in her spare time. She compiled a list of science-related links, for kids and adults, on her blog full of science, parenting, and “the joy of life after cancer” that will no doubt become part of her legacy.

Rachel and Susan are beautiful examples of the pioneers in BC blogging. They blazed a trail and lit the way for newbies like me. They challenged and questioned and refused to wrap themselves in pink ribbons. They inspired me. By setting such a stalwart example, they encouraged me to do the same.

I’m not alone in my admiration for and my grief over these two women. A few blurbs from the BC world about them:

“Pretending that the pain isn’t here would be a disservice to the raw honesty of their voices.”

“I am stepping up to be a fearless & rebel friend. We need to keep their voices strong & heard by many.”

“If I could dim the lights on my blog, I would. We all took a big hit today.”

“I feel more resolve to stir the hornet’s nest.”

“CRAP CRAP CRAP.”

“Talk about hopes, dreams, plans, fears–then get out and live the life in front of you.”

“We will mourn and we will be sad and then we will become a FORCE that will not be turned back.”

Powerful words that befit powerful women.

When I created this little blog, it was initially to keep those closest to me informed of the steps and stages in my cancer “journey.” The plot thickened, however, and that “journey” became more perilous. A mysterious post-mastectomy infection, a month’s worth of hospitalizations that spanned the summer and three different hospitals in my great city, multiple surgeries to contain the scope of the infection’s destruction, two infectious disease teams, countless bags of antibiotics–both in the hospital and at home, and 267 days of oral abx gave me a lot on which to report.

Then came the harrowing process known as reconstruction. Thanks to the infection, nothing was simple, and what should be the final stage of the BC “journey” was anything but. Two revisions later, there’s still work to be done, and I’ve got many miles to go before I sleep. This little blog went from “Hey y’all, here’s what’s happening” to “y’all aren’t gonna believe this,” and in the process, this little blog morphed from a news bulletin to some serious therapy for its author and creator. Without the outlet that is publishing my most pressing thoughts, I could possibly be staring through the peephole of a padded cell instead of pounding out my latest missive on my iPad in the comforts of home.

I knew when I started this little blog that I would learn from my fellow BC bloggers, but I didn’t know I’d learn so much about this vicious disease that, for a time, took over my life and that has forever changed my life. As I put myself out there in the blogosphere and in the twitterverse, I found more and more blogs written by women like me–everyday gals from all walks of life in all corners of the globe confronting a nasty beast while also maintaining a career, running a household, and/or raising children. I’ve gotten to “know” some incredible women whose writings have educated, humbled, enlightened, and entertained me. Somewhere along the way, in between the updates and follow-ups that become the fabric of a cancer patient’s life, we became friends. United in our commonality of being members of a club we never wanted to join, we bond over blogs. We hold our breath as our blog friends report the news of the ever-ominous follow-up scans, willing it to be NED (no evidence of disease) news. We wake to the words on the screen written by fellow foot soldiers in this wrenching war. We cheer aloud in front of glowing computer screens late at night when there’s news of a final radiation session, and get teary-eyed  as we envision our blog friend ringing the bell in the infusion suite to signify the completion of chemo. We nod our heads in tacit understanding of the trials & tribulations that are a cancerchick’s life. We lean on each other and support each other, hopefully in equal measure.

In the throes of my cancer “battle,” I had a hard time reading the blogs of the cancerchicks who were battling MBC, the acronym for metastatic breast cancer. I shied away from those blogs because they were living the life that scared me the most. See, in my naivete, I wanted to believe that a cancer diagnosis at age 40 was the worst thing I’d ever endure (even thought I knew that facing the death of sweet mama was a million times harder). I wanted to believe that my cancer was the good kind, the easy kind, the kind that would never come back, even though in my heart of hearts I fear that it’s only a matter of time. In the beginning, I read the BC blogs from the outside, looking in, but before long, I became one of them. Like Rachel preaching the deception of SGK and dreaming of escaping from it all in a red karmann ghia, and like Susan arguing with her oncologist and imploring him to discharge her from the hospital after too many days away from her precious kiddos, I became one of them. They led by example and encouraged me to widen my sphere of influence. They were like rock stars in the blogging world — I looked up to them. Like getting an autograph from an admired celeb, a comment from them on one of my posts on my little blog was a thrilling keepsake. That their comments are no more fills me with great sadness. Thinking about those they leave behind — Rachel’s scruffy little dog, Susan’s sweet little boys — sears my heart.

Ralph Waldo Emerson wrote, “Do not go where path may lead, go instead where there is no path & leave a trail”  Rachel and Susan, you have my heartfelt thanks for leaving a trail.