I completed another lap around the sun on Wednesday, and it’s felt like a particularly big one. The last year aged me exponentially as compared to previous years. Am I any wiser for it? I think so. I hope so. Of course, when you’re in the middle of growing, it can be quite difficult to see what’s developing out of the chaos. But now, more than ever, I do feel solidly anchored to who I am, and clearer about my purpose here on Earth than when I’ve rounded the bend on previous decades. I’m told by my elders to expect more of this with each passing year. Bring it on, I say.
Forty-eight was a momentous year, and I would have to say, a painful one, filled with some life-altering developments. Namely these had to do with my health, and receiving multiple diagnoses that have been difficult to process. To arrive at this place of now finally knowing instead of not knowing, I logged more time in doctors offices than perhaps in my cumulative experience of existence to date. After countless appointments and tests, I have finally gotten to the bottom of some issues that were downright mystifying up until now. Finding these answers has been a relief in that it has helped to put the way I’ve been feeling into context. But reality is a horse pill; it can be pretty tough to swallow.
Tomorrow I’ll be going in for a huge, approximately eleven hour surgery, one that I have been anticipating for almost three months now, and steadily progressing toward for about the last ten years, as far as the disease process goes. Submitting to this was difficult, but I found agency, and have come to see this is an act of deepest self care. Not the get-a-pedicure or escape into a bubble bath and forget everything-kind of self care, but the kind that affirms I want life enough to go through serious hardship to assure I will continue to live it.
I am quite nervous about this intervention. One of the ways that’s been manifesting has been a strange relationship with time. It’s been pushing and pulling in weird ways as I’ve waited for the big day to arrive.
When it comes to being in pain and having anxiety about the outcome of this surgery, time has dragged on interminably. I’ve lost a lot of sleep over uncertianties, and felt ravaged by anticipatory stress. Amid these feelings, the days have stretched out like taffy while everything hung suspended, inching toward the date on the calendar with only the slowest, almost imperceptible movement. Struck with the sense that I’m waiting to move through this so I can get on with life, I’ve have wished at times I could do something to accelerate the process.
Then again, knowing what the healing process will entail, and in darker moments, finding myself consumed by fears of possibly being permanently disfigured, and a lot of other scary outcomes I can drum up in my very active imagination, I’ve wanted to bury my head in the sand. Those days, it seemed as though surgery was hurtling toward me lightning-fast. Even if everything goes well, there will be many scars, some serious challenges, and a whole new contour to adjust to. When these dizzying realities (and imaginings) have come to call, I’ve wanted to hit an escape button, and to slow time down. If only I could somehow just float away from it all…
In particular, the fact I will have “T-rex arms” and be unable to stand up straight for a while after the procedure has applied a certain pressure. There will be weeks when I cannot drive, will have difficulty washing my own hair, and be unable to walk my dogs on leashes. This has been making me panicky about the fast movement of time, and unsure how I will ever accomplish all the things on my to-do list before I am rendered incapable for many weeks — months, even. (Spoiler alert: I didn’t.) Because of this, in addition to the types of things you’d expect to see on a surgery preparation list, mine has included weird items such as: chop down all the dead banana trees in the backyard, and wash windows. I don’t want to be stuck in a chair staring at a big mess for months.
I’ve waited and waited, paced the floor, tossed and turned, and done what I could to prepare — including nothing at times, because emotionally, I couldn’t. And these many weeks later, here we are. It’s one day before go-time and the house is not perfect. I didn’t make nearly enough frozen meals. The garden is still a mess (though I did deal with the bananas!). The to-do list is far from completed, and I just have to let it all go.
I’ve had multiple talks with myself about this, and have realized what unrealistic expectations I’ve been crushing myself with. If I have a clean house before going into this, surely my outcome will be better = flawed logic. It’s as if I’ve wanted everything to be in order before surrendering control. But I’m now forced to accept that there’s no way to tie a neat little bow on everything. I must reframe all this messiness as an important sort of compost heap — a rich source of material from which difficult experiences can be transformed into something nourishing.
I’ll just have to cross over as I am, and trust that there will be helpers on the other side.
I can see that this event will bifurcate my life. Henceforth, the recalling of time will evermore be divided into before and after the double mastectomy and DIEP flap breast reconstruction.
Are we ever prepared for such things?
These final weeks have reminded me of being hugely pregnant, waiting for childbirth. Days have stretched on interminably and I’ve often felt lost in a fog, unable to wrap my head completely around what’s about to happen. The ground rushes past as though I’m strapped into a speeding car, while my reflexes feel slowed.
In short: I am sick of waiting. Also: I will never be ready.
Living within this paradox, I have been holding close to a quote from Anaïs Nin, something I have shared many times with pregnant women, swollen with anticipation:
“And the day came when the risk to remain tight in a bud was more painful than the risk it took to blossom.”
Knowing I won’t be able to soak for some time when I’m healing big incisions on my chest and abdomen, I’ve been spending a lot of time in the bathtub. It’s my happy place. Slipping my shoulders under the blanket of warmth brings a much needed, big deep breath. It eases the weight of the world, and temporarily, at least, soaks away some of the pain. I have always felt greatly eased by water, and will miss it dearly in the weeks to come — the peaceful candlelight, the relaxation that comes over my muscles, the blessed silence of having my head submerged. Calgon, take me away...
In the water, I lean in to listen quietly to the voice of my heart. Slowly, I turn my mind, like a large ship in a small channel, from the thousands of horrific anxieties I can invent, to focus my attention instead on the outcome I most want: Health, vitality, to live fully and well.
I realize I have to honor all the various feelings that come along for the ride, even if I don’t like them. In my forty-nine years, I’ve learned that ignoring negative emotions is similar to trying to tune out a tantruming two year old: it doesn’t work. They just get louder. One must come to the floor, move closer to the frustration, and find a way through. An upset child needs to be held, to be shown that their needs will be attended to and met. They need their grown-ups to model acceptance, and to help them regulate. Right now, I am my inner child, and I’m my own adult. We push and pull each other across the rocky terrain.
I try to forgive myself, and to make room for the thousands of less glamorous ways I am sometimes five years old when I get triggered: impatient, intolerant, scared, driven to distraction, bull headed, anxious, and at times, even short tempered with my husband — the safe one, the one who has been here for me through it all. In light of these truths about myself, I often struggle to feel like a good enough, valid person, worthy of love. I float with all of this, and put my head under the water where I listen to the pulse roaring in my ears.
Stella to Calgon: Calgon, I’m still here.
With the important stuff checked off the list, and surgery scheduled for Monday morning, everything has been basically on track, going as planned. Then on Thursday the bottom fell out for about twenty-four hours, when I received a phone call from the nurse at my surgeon’s office.
“I have some bad news. Your insurance company has denied pre-authorization.”
Suddenly, I found myself consumed with stress, and all of my attention turned to a two-day, adrenalin-filled fight with the insurance company.
Luckily, I speak broken Medicalese (aging comes with something of a medical degree, if nothing else), and I used to bill insurance myself in my midwifery practice. So I have a slight leg-up. I’m aware of some lingo that can help “escalate” a case. There are certain buzzwords to throw around, and I do, but there’s only so much one can do when up against the machine of this mammoth industry.
The insurance company says that to see if it’s possible to move beyond the denial for this procedure, they’ll require a peer-to-peer review. This amounts to a conversation with a doctor from their medical board having a conversation with my surgeon. That sounds simple, but it’s not. Not when my nurse can’t reach anything but robotic “push this for that” options, and at every turn, finds nothing but dead ends and voicemail. No matter how she’s tried, she says she can’t get through to a human, and therefore can’t set up this review.
I try very hard to maintain my cool, methodically picking my way through the landmines, though at a certain point, I do reflect on a meme I’ve seen recently, showing a murderous woman holding a weapon. The caption says, They say you catch more flies with honey, but I’m pretty sure I could catch plenty with your dead corpse. I try hard to throw to the honey-side of this metaphor even as my blood boils, and my eyes turn red. Because I’m forty-nine now, and that means I need to “adult.”
We literally have one day to accomplish all of this before my whole plan gets thrown overboard. It’s Thursday afternoon when the nurse tells me the hospital requires pre-authorization by 2:00pm on Friday. That’s when I start calling them myself, and having tiny, honey-coated tantrums. I’m simultaneously aging by the minute, and starting to regress.
I’d far prefer to be using my last few days as a whole, somewhat able-bodied-even-if diseased person to listen to the pre-surgery, anxiety-quelling meditations friends have sent me. I’d like to take extra baths, eat and rest well, perhaps sing some songs while I can still hold a guitar against my chest. Alas.
All I can think is that perhaps things like illness and fights with insurance companies are just proof I’m still here. That life’s messes continue to rage on is a sign there’s still a healthy enough heart beating in my chest.
The doctor blames the insurance company, and the insurance company blames the doctors. The supervisor I finally get on the line reveals that they only received the paperwork eight days ago, and says it normally takes at least fourteen days to get a pre-authorization. She makes it sound like they’ve done me a huge favor by speeding the process along, and the doctor makes it sound like the insurance people are pretending they don’t see the information pertaining to my diagnoses. I learn that getting a peer-to-peer review scheduled is usually at least a 72 hour process. And God forbid, if after peer review, there is still a denial and an appeal is needed, that can take 30 days. Why did my doctor wait so long to submit all of this, when we’ve had this surgery on the books for more than two months?
When office hours close at the end of the day on Thursday, there’s been no progress. Friday morning comes and finally, finally, after many misfires, I get a very helpful woman from their clinical staff named Lois on the phone. There’s sympathy in her husky voice, and a strong determination to help. I can see her in my mind’s eye: horn-rimmed glasses, nylons and sensible shoes, a lot of hairspray, probably a hint of nicotine staining her fingers. I hear them flying across the keyboard while I tell her of my plight. Somehow she has remained human in a completely robotic system. Her kindness is palpable, and she’s all business. If anyone can get this to happen, it’s Lois.
While I have her on the line, I use my husband’s phone to call my nurse. Now here I am, walking my dogs in through the forest, holding two phones next to each other on speaker, conducting an impromptu phone conference, while Lois types messages to three other people to try to get this damn peer-to-peer review meeting scheduled.
Bless her heart, she manages to do what everyone is saying is impossible, and arranges it for 11:00, the one and only window my surgeon has available that day, just three hours from the hospital’s deadline.
Is scheduling a peer-to-peer review between my doctor and the insurance company a patient’s responsibility? No. Hell no. It definitely is not. But if I didn’t find a way to do this, no one else was going to. And then all these pre-operative, gut-destroying antibiotics I’m taking would be for naught. The expensive dog care I’ve arranged would be for no good reason. The time my husband has fought tooth and nail to get off of work: all for nothing. And the four different, extremely kind people who are traveling from Florida, Mississippi, and Alaska to help out during the first few weeks after surgery, who have rearranged their lives in order to be here for me — they would be screwed, as well. Not to mention: I’m tired of being in pain and I need to get this diseased tissue removed from my body.
It was an epic 24 hours. I got mad. I cried. I shook my fist at the sky. I waited on hold for an hour at a time. I almost threw my phone into the woods while walking and trying to understand the broken voices coming to me from far, far away, muffled as though underwater. Over and over, my call got dropped during transfers. I was continually sent spinning off in the wrong direction, put through to the wrong person, even sent to the wrong company at one point. I kept asking to speak to supervisors, and each time someone new came on the line, I had to start from the beginning again. This happened at least six or seven times. Until finally, I got Lois.
You would think that would be the end of the story, but no. The doctor who conducted the peer review STILL DENIED MY CASE.
It felt as though my whole life rested on the strike of that pen, and now I was getting truly pissed.
Why was this being denied? I have Atypical Ductal Hyperplasia (ADH), many breast masses, a calculated risk of breast cancer of 40.7%, chronic inflammatory mastitis, duct ectasia, endless, dangerous infections, and am presently taking my 8th round of antibiotics, just since August, so what the FUCK?????
“Well, we didn’t receive information about any risk factors in the paperwork that your doctor sent over,” says the eleventh insurance person I’ve dealt with on this day, and this one is snarky.
“Yes, you did! It’s on page six of nineteen,” I say, glad that by now I’ve heard two nurses on my surgical team discussing this in their exasperation.
I fight and fight, not only with the insurance company, but now I’m starting to have to stand up for myself with clinical staff at both of my surgeons offices, too. Thinking this was dead in the water, they’ve begun serious conversations with another patient, making designs to give my surgery date away to someone else. Whoa! Slow down a minute!
“Well, we need to let this patient know as soon as possible. She’ll need time to prepare,” they say, when I resist. “It’s not fair to spring it on them last minute.”
I hold my tongue. I can think of a lot of retorts to that, all of them scathing. I’m starting to breathe fast and shallowly now, because I know this rush to fill my spot before I’ve even fully vacated it is about surgeons wanting to avoid gaps in their schedules, more than anything. They have to keep cash flowing, in order to afford the pink and gold encrusted waiting room and such.
Freaked-out Child Stella is tempted to lose it, but Adult Stella digs deep and uses a big, measured voice. “Please do NOT give my slot away until we are absolutely certain there’s no way this can go forward.”
“There’s no way.”
“Well, you said we have until 2:00 before the hospital boots us off the schedule. I’m sorry, but this other woman is just going to have to wait another hour and a half. That’s far less inconvenient for her than what it will be for me and everyone in my life if I have to be rescheduled. I’d like to keep trying.” I’m digging my heels in, now.
“There’s nothing else to try.”
Watch me, I wanted to say. And also, MY GOD! Calgon??? Take me AWAY!
I feel for the folks that don’t have my same ability to self-advocate, who, in their hour of need, get bulldozed by this terribly broken system. I imagine people weak and nauseated on chemo, or suffering cognitive impairment — how would they ever find a way through this maze?
At 1:00 pm, I know it’s a Hail Mary, but I try once more. It’s a total miracle when I get someone on the phone who finally agrees to look at page six of nineteen.
“Ohhhhh, it is there. Ok, I’ll screen shot this right now, and send it to the medical board.”
We literally had 50 minutes left before the deadline, but we did it. I broke down and sobbed. My husband held me while my shoulders shook. I shouldn’t have to be dealing with this BULLSHIT when I’m already handling the health issues necessitating this big, scary event in my life.
The nurse can’t believe what has been accomplished when we speak next.
“Well, I did pray the rosary for you last night,” she says, taking all the credit. “I had a martini while I did it, but it must have worked anyway.”
I thank her and any benefactors that may have been called to help from the unseen world (just in case), and don’t say that what worked was me not giving up, me spending a cumulative seven hours on the phone doing three people’s jobs for them, me self-advocating. I don’t say it only worked because I resisted her impulse to accept defeat and give my slot away to someone else. I don’t say WHY, IN THE NAME OF ALL THAT IS HOLY, DID YOU WAIT SO LONG TO SUBMIT THIS TO INSURANCE IN THE FIRST PLACE?
I don’t say any of that, because maybe at 49 I am finally becoming a grown up. Maybe I know that seeking validation from the nurse won’t do anyone any good, the same way I finally know my mother is not coming for me, no matter how I might cry. But that’s another story — a story of estrangement and mental illness. I’ve been grief stricken about this lately in a way that’s fresh all over again as I face such a momentous occasion, and the mom-shaped hole gets filled by my chosen family, instead. Lovely, loving people who will come to do what a blood-family should do.
Maybe the therapy is working. I pick my little-kid self up in my big grown-up arms and hold her. I’m here. I’m still here.
Pain like this is just another sign that I’m still alive. I don’t want to turn away from it. I don’t want to numb it. I don’t want to pretend it’s not happening. The trick is to hold disparate parts of a self together at once, acknowledging what hurts, while keeping gratitude in view. When I stop to count my many blessings, I realize they are always bigger than the litany of complaints.
First on the list is my husband. While our love has been tested, it has proven strong — galvanized, I would even say, by the hardships we’ve navigated together. Perhaps the biggest challenges we will face are yet to come (that does seem to be the trend with aging), but I can see now that we have what it takes to get through anything. That is a gift.
Then there are my friends, and oh my goodness, am I ever lucky in that department. We have been completely blown away by the support that has been pouring in. People have come out of the woodwork with phone calls and cards, and have mailed incredible gifts. So many have contributed generously to our GoFundMe and Meal Train campaigns, which were buoys we desperately needed but would never have thought possible. All of this has affirmed that, though I may be drowning in imperfections, and in dark moments unsure how I could possibly be loveable, somehow I am. Every text and call and gift has been a vote of confidence, lifting me to higher ground, acting as a bridge to a safer place across turbulent water.
In the spirit of counting gratitudes, I will leave you with this list. Here, in no particular order, is a different sort of material proof that I’m still here, evidence that life is full of sweetness. Please leave a comment with some of the things from your list. Tell me what keeps your heart beating. Share some small joys I can anchor to when I wake up on the other side of the shore.
Puppies
Cups of tea brewed just right
Twin fiddles
Warm baths at the turn of a knob
Watching babies learn about dirt
Dirt
Belly laughs
Back rubs
Chickweed at the base of the crepe myrtle
Two-stepping
The lizard that’s taken up residence in the corner of our living room
Pleasant chats with total strangers
Libraries
Unseen help
A clean kitchen
Sunrises
Children that smile from shopping carts, unbeknownst to mothers
Cool pillows during hot flashes
Anonymous donors
Dandelions pushing through cracks in concrete
River otter tracks by the water
The first blank page of a new notebook
The last page of a full notebook
Violets popping up from dead leaves
Mourning doves
A smile on a dog
Waltzing in the kitchen
Getting utterly lost in a good book
Kicks of the unborn
Generosity between friends
Brand new leaves bursting out of the fig tree
Sad Songs
Sunsets
Fresh veggies from the garden
You
I will be thinking about you tomorrow. That prior authorization mess is so awful. I've been there several times trying to get care for my daughter, and I can't even imagine how much worse it is when you are the one who is supposed to be getting surgery and when you have so much other support organized. It's not our job do to this and yet somehow between all the different parties we are the only one who can get them all to understand that it requires coordination. You are as always a beautiful writer and a beautiful person, and I'm glad the day is finally here even though you did not prepare as many frozen meals as you thought you'd need.
Sunsets.
The way the lights creeps through the trees in the forest.
Alpenglow as it kisses the tips of green leaves and bare branches alike.
Dog yawns.
The smell of the forest floor and how it sounds like a thick carpet.
Snow cresting and blowing from mountain peaks.
Snuggles from my growing child.
The way kitties squint to say I love you.
I love you. See you on the other side of this, but know that I’m holding you in my heart as we venture forward. You are amazing.