***Fair warning….this is really long. As always, and especially in this post, apologies for misspelling, bad grammar, run-on sentences and the F-Bomb and other “swearisms.” If you slog through the whole thing, I beg you’ll understand the timing and cut me some slack.

L

August 13, 2018

I had “medium major surgery,” my surgeon’s label, for a breast cancer lumpectomy and sentinel node excision today at a highly rated, 4-year old and small-ish (65-bed) regional hospital, Corning-Guthrie (G-CH) in Corning, NY.

I chose G-CH because it is affiliated with and managed by a large public non-profit hospital system, Guthrie-Robert Packer in Sayre, PA, far and away rated highest (mostly A+ and A-) in patient care with high marks across the board in other important areas like “less corpses during surgery,” (Just kidding) and a long list of positives pertaining to medical outcomes, quality of care and patient-centered criteria. The Guthrie-Packer Group is also newly affiliated with the Mayo Clinic and its resources. I chose this hospital also because it is not part of the three, much closer Syracuse public hospital systems with cancer treatment centers or treatment capabilities that have mediocre to bad reputations and, no surprise, dismal ratings.

I chose this particular surgeon, John Olmstead, MD, because I trusted his 20 years of experience, his nearly 100% 5-star reviews. During our appointment, he was engaged, straightforward with information he made sure I understood and never rushed my husband and I. He was kind, concerned with a bedside manner any prospective patient would appreciate. What’s not to like?

I did hours and hours of research to reach my decisions on hospital and surgeon. Believe me, it’s an eye-opening process. The big “world famous” cancer centers are a mixed bag of ratings, some really horrible across the board. I trusted my gut that for what stage cancer I was facing. The Mayo Clinic would have been my choice had I seriously considered all top rated cancer treatment centers. I settled on the “best local” rather than the stresses of travel to distant highly rated medical facilities. The possibility of several long trips, hotel stays (depressing), general all-around hassles in a strange city made for me, poor choices. Home for recovery was best. A local hospital with access to Mayo if needed was, without question, an unexpected surprise and took all others off the table.

Dr. O, as everyone calls him, removed a tiny, malignant 7-9 cm lump from my right breast and three lymph nodes. He told me this: “If you have to have breast cancer, this is definitely the one you’d want.” Okey-Dokey then. Thats a perspective I didn’t see coming. Other less pleasant options considered and still on the table, I hope he’s 100% right.

I am still awaiting biopsy results on the nodes but no matter, weeks TBD of daily radiation are in the queue in about a month, then probably 5-10 years of Tamoxifen pill chemo. I’d rather have sat out this entire dance and medically induced extravaganza…but…

So, and this may surprise some of you, this post is by no means any sort of criticism at all about the compassionate doctors, nurses, techs and volunteers who have been part of my journey through this last month up to and including today. Bottom line, I know I’ve made the right decisions.

But also…part of this post is a critique of this new hospital building itself. I must first state that G-CH should be applauded as a much needed, first class public facility to serve the very large number of low income New Yorkers in the Southern Tier. Good docs and nurses can practice good medicine almost anywhere from war zones to Beverly Hills. From a “sidewalk superintendent’s” view, maybe in rare instances, good docs, nurses and hospital personnel might find a brand new facility they all hoped would include their “wish lists” falls short in many important ways so serious, even “make do” is difficult to achieve.

Whoever designed the new G-CH hospital must have previously designed maximum security prisons. In its entirety, from the main entry way and in every wing, hallway and room I visited, it is institutional, windowless, lifeless in color and mood: dark gray and dull brown walls, dark wood, gray stone, gray tile flooring. Three or four dark public and clinic waiting areas are situated off to the sides of the busy main entrance hallway. These have a few uncomfortable chairs like wagons circled, a couple of small tables interspersed. No lamps, no lighting, no TV in all but one, not even any old Guns & Ammo or People mags. Because Corning Glass donated the land and continues to be the major benefactor, here and there are built in lit shadowboxes featuring less than spectacular glass bowls, vases, sculptures from the Museum’s vast collection. Nice but these expensive pieces would have served the hospital, patients, staff and community better if they had been auctioned off to buy TV’s, table lamps, bright colored comfy furniture and plants and trees as a mood-lifting counterpoint to the morose, institutional feeling. While possibly intended to be “clean and modern,” instead it is overwhelmingly depressing space that should instead engender, life, wellness and hope.

In addition, room sizes for certain functions that call for large scale equipment need to be spacious enough to actually contain this stuff, ancillary controls, cabinets, etc. AND the staff members who operate it. During my two visits, I heard this complaint from two different staff and saw it for myself.

Pre-admission testing. The “waiting room” for MRI’s (translation: ” medieval torture device”) is a small locker room/barely curtained “dressing” area with three steel folding chairs and an overhead light control switch that turns all lights off after 2-3 minutes of sensing no movement. We’re talking pitch black here. I got the hell out of there and wandered the long, empty hallway of the radiology wing finally finding a small proper waiting room for some other thing like CAT/PET scan. At least there was padded furniture, old mags and a TV. Sheesh, I thought, that MRI locker room was pretty shitty treatment for the absolute worse diagnostic tool treatment EVER. Was the steampunk metal decor the hospital’s rationale to ensure the entire MRI nightmare sucked???? Having moved myself uptown, I giggled wondering how long it would take for someone to deduce my absence by first looking at my assigned locker, No. 1. A missing key meant it was clearly still occupied with my belongings. Had the key and its holder split! Ha! I was easily discovered by an MRI tech guy who had figured out the misery (or mystery) of the empty, cold, dark room long ago. I did sort of voice my opinion of the situation as we were walking back to start the actual MRI hellishness I dreaded.

Surgery Day. Just prior to surgery, I had to have a second “marker” inserted to confirm the first marker from the previous goddamn needle biopsy a month earlier was still in place and at the location of the little, evil bastard that caused this mess. Bear with me here. I was taken to a 10’x10′ “room” that contained an ~8’x5′ specialized mammo with a bed, the safety screen area and controls squeezed at the end, ~2’x4′. On the other side of the “room,” there were two 48″ pass doors opposite each other that could not open all the way because of a base and wall cabinet with sink ~3’x4,’ a therapeutic high chair, trash and needle disposals. Keep up with the math. This is 100% of your final grade. Tell me how much space is left for a radiologist, a tech and an RN to “move around” in? Give up? Give or take, no more than 2’x7.” This tiny dance floor seemed hardly adequate for a single radiologist who is to complete a delicate, excruciating tube & wire insertion procedure that requires utmost accuracy. I’m sitting in aforementioned chair, my boob is being compressed violently into an IHOP pancake and the nurse is holding my right shoulder and arm rock steady while the tech is squeezing between everyone to set dial controls in coordinates on an overlay grid that will eventually translate the image to the surgeon’s electronic scalpel. Did I mention the rolling medical tray jammed between the radiologist and tech holding scary looking packets of things that are going into my body? While the radiologist is ripping open packets and snapping bits and pieces of plastic together, the nurse, Barb, not too much younger than me, surrounding my body with hers me whispered not to move…or to laugh and I was forbidden to even think of the Twister game. Of course, this back fired spectacularly causing the young female radiologist to keep clearing her throat…with meaning. I took the deep breaths per her orders and turned my brain off. But for all my dread and the pain this Part A of the procedure caused..and let me tell you, shooting four 3″ needles of lidocaine then drilling in a 4+” tube, no matter how tiny it is, into my already painfully squished boob via a spot close to the nipple hurts like hell (extreme understatement- 10 on the pain scale). But, I was warned of this and it was one necessary evil to hopefully end another. I think I only screamed “fuck” barely audibly under my breath three times. I am certain these three totally cool and humanely warm, compassionate and gentle women are prime examples of our better angels. They have to be to treat women who put their lives in their hands. And to pull off such exacting medicine, these three women do this impossible dance every day. They deserve so much better and will receive a thank you note from me.

I remember nothing of the surgery. I came out of the anesthesia very slowly and deathly thirsty and voraciously hungry. The breathing tube inserted down my throat decimated my voice and salivary glands for about two hours…which made me try to snap at my post-surgery nurse. She was older, a big brick of a woman spouting an army nurse’s pronouncements that I must eat some number of ounces of dry crackers and I must drink two cans of ginger ale before I am released. And she sat right there next to my gurney working away on her laptop with one evil eye on me at all times. I tried and it all turned to concrete and gagged me. I did my old Ice Queen glare and scratch out a convincingly snarky “Really? Seriously?” My husband, Ed, stepped in and assured her that he would take over the nudging and encouraging if she needed to look in on other patients (wink, wink, nod, nod). She left and he found ice water somewhere. Better. And, from years of experience, a “situation” diplomatically diffused. 12 oz. water and 12…okay 8 crackers…no, that’s a lie….I gagged down 6…consumed. I sure hope the 6 I shoved under the pee pad I was laying on don’t make too big of a mess for whoever cleans the room.

So, sixteen hours later (including three hours of travel), I am home, alert, wide-awake and enjoying a nearly pain free evening. Experience gleaned and remembered from two previous surgeries, one routine, another high risk, has taught me well that these halcyon hours never last.

Tomorrow will be different…painful, uncomfortable, once again enraged that 7-9 cm of deadly cancerous shit removed from my body has left me to endure some disfigurement, weeks of the exhausting side effects of radiation and years of a daily pill that will fight to keep this shitty disease from recurring. If all this works, I’ll be one of the lucky ones in the sorority of mothers, daughters, grandmothers and other women who endured, who won, who survived. We certainly owe a huge debt of gratitude to those like my sister-in-law who didn’t and their families, many of whom participated in clinical trials to find “the elusive cure.” I must give thanks to countless health care professionals, breast cancer associations, advocates, who worked tirelessly alongside breast cancer patients so that my odds are pretty good that my life journey can continue after this unpleasant disruption. I hope.

I have people and places to thank deeply from my heart:

Ithaca Cancer Resource Center. From Amazing Grace, “I was lost and now I’m found…” You were my second call after United Health Care’s Cancer Connect’s absurdly useless 12 year old “nurse” rained her inexperience and inaccurate information down on me without a drop of empathy. One subsequent phone call and a 180° difference. In less than a few seconds, I felt your arms around me, Rocia. Monica, you joined me in a conversation and called me again and listened as if I was the only cancer patient in the world and You said the right words, asked the right questions and you and Rocia sent just the kind information that got me through today and will guide me to the end of this journey.

Cayuga Medical Center (CMC) Imaging & Radiology-Cortland – Great, caring people at every turn.

CMC Medical staff including the radiologist who had to call me on Friday the Thirteenth of July to tell me the bad news. Also his nurse who lovingly navigated me when my anxiety went through the roof during a painful needle biopsy.

My excellent surgeon and his office nurse.

Guthrie-Corning Hospital’s kind, always-smiling volunteers (a/k/a grandmothers we’d all want to have by our side in a crisis…they walk with us arm in arm) Administrative staff, including the poor, nervous 60-something woman, first day on the job in Admissions, who saw my DX and nearly froze unable to input my insurance crap. I put my hand on her arm and squeezed and said kindly, “My dear, don’t worry. Women are sooo much tougher than all this shit! Breathe! We’ll get through this.” We did.

G-CH’s doc’s, nurses, techs (I sheepishly include thanks and an apology to the MRI tech whose path unfortunately crossed with my nasty temper late on a Friday afternoon)

My devoted husband who stepped brilliantly into his role of equal partner, advocate and voice when my own mouth couldn’t summon words of patience and kindness.

My beloved long-distance friend/sister-I-never-had (you know who you are “dahling”). Magic happens in moments of crisis when two independent women who always speak honestly, at times about the hard, difficult truths of life yet “we” two are also bottomless vessels filled with love and caring (LOL…just don’t cross us) I am so, so, so lucky we found each other after 50 years!

Last but not least, Duffy the Wonder Cat, my joy for a dozen years, who always…ALWAYS…knows what I need when I need it and gives me his wondrous love in special ways only feline fur babies can.

Thank you all for reading this. Updates will likely pop up here from time to time. Please no Facebook chatter. I have a family member there who is losing her fight with lung cancer. Best for everyone that she doesn’t add my DX to her plate of stresses.