Routine

At 8:30 every weekday morning for the past five weeks I pull on my coat, scarf, and gloves, pick up my purse, knitting, and keys, open the garage door, walk out to the garage and slide into the driver's seat, start the car and back down the driveway, follow a familiar 2.7 mile route through five stoplights and ten turns (six rights & four lefts), enter a parking garage where I leave my car, walk up a ramp to an exterior door and three more interior doors, change into an overly large, bright pink gown in a cold changing room where I stow my coat, purse, shirt, and bra. After placing the locker key in my right pocket I take a seat in a small room to wait for my nine-o'clock radiation therapy appointment with an ever changing assortment of companions.

Nothing in the routine has changed except the faces sharing the waiting room. Some are old timers with just a few days before their treatment is complete. Others are anxious newbies. We have not been introduced by name - we know each other only by demeanor and diagnosis: chatty breast cancer patient; jolly Scotsman with a brain tumor; artfully dressed woman who will soon have chemotherapy delivered to her spine through a hole drilled in her scull, remorseful smoker with lung cancer, optimistic woman who arrives in a wheel chair due to melanoma in her hip. Some read magazines or the newspaper. One works on a jigsaw puzzle. A few are content with their own thoughts. I knit.

Alan opens the door and calls my name. After stashing my knitting, I pass the control center where Mary is checking computer monitors and then walk through a wide door, down a short hall with a left turn into a large dimly lit room. Three walls are lined with shelves holding metal braces, skull shaped head gear, and mysterious gadgets. A machine projects like a giant's finger from a large calibrated disk on the fourth wall. My custom foam pad is waiting for me under a sheet on the hard narrow slab of the treatment table.

Sitting down and swinging my feet up onto the table, I let the left side of my gown fall open. Melissa slides a pillow under my legs while I settle my head into a depression and raise my left arm to grab a handhold in the pad. Alan adjust me until tattoos on my waist and sternum line up with piercing red lights beaming from the ceiling and walls. They tilt the machine to the right stopping less than an arm's length from my face. After the final adjustments have been checked the techs leave the room. A humming sound, lasting for about 30 seconds, indicates the radiation is on. The machine is then pivoted to the left for another 25 or 30 second treatment. Melissa returns to help me up from the table. I hear Mary say, "see you tomorrow at nine," as I retrace my steps to the changing room.

There is something to be said for routines - they impose comforting structure on an otherwise random universe. I know where I was last Tuesday morning and where I will be next Thursday. The remainder of my day is anchored by the morning ritual. Just seven more treatments and radiation therapy will be finished. As odd as this may sound, I will mourn the loss of a morning routine.

The Alien - Part Six: Deja vu

When we arrive at the hospital on Wednesday two hours before the new surgery at least we know what to expect. Repeating each step of the process we greet the familiar staff with, “It was so much fun last week we decided to come back.”

I’m settled into a room in short stay. Janet, the nurse from last Tuesday, stops by to say hello while Kathy checks my vital signs. Then Janice appears at the door. Recognizing me as soon as she walks into the room, she laughs and says, “Oh no, not you - I should have gone to lunch.” She patiently works her magic on another IV.

I wait for an hour before someone comes to transport me. This time I’m in the “big kid” pre-op and surgery instead of short stay surgery. No sampling chocolates in this serious environment. I notice the humorless LPN who rolled me into pre-op the last time tending patients on the other side of the room. My LPN is cheerie, but the mood in the room is not light. Five or six beds with anxiously waiting patients are tucked in between cubicle curtains.

Anesthesiologists start swarming around the charts at the nurse’s station. One finally comes over to me and I give him my speech about nausea and dizziness. He seems only slightly interested when I ask him to look up the anesthesia from last week. “Sign here so I can treat you,” he says and then leaves. I have an uneasy feeling – I prefer the reassuring young woman to this guy. Once again I am rolled down the hall into a brightly lit room - this one larger and less cluttered. As they slide me over to the narrow operating table I see the anesthesiologist and feel a sting rush up my arm from the IV.

There are voices and people moving around. I can’t keep my eyes open, I feel dizzy. The same voice from last time tells me the surgery is over and before long someone is wheeling me down the hall to the elevator. It feels like the dips and turns of a wild amusement park ride.

Gary meets us at the elevator and follows my bed back to the room. Unlike last time I can’t keep my eyes open, can’t stand to have the lights on, and the thought of crackers and juice makes me queasy. My head feels like it will explode from the dizziness. Waves of nausea wash over me. People scurry around, but I can’t open my eyes to see who they are.

Six or seven hours later with an anti nausea drug in my system I start to feel like I might live. It takes another hour before I meet the discharge criteria. At a few minutes before nine-o-clock in the evening I’m the last short stay patient to go home.

My sense of humor returns the next morning after a crazy dream filled night on the sofa. In a message to my network of supporters titled “From the Dizzy Dame” I blame the anesthesiologist’s heavy handed cocktail for the tailspin after surgery.

As much as I didn’t want to go through the process again it was worth it. I can tell right away even with the gauze in place I am no longer a lopsided double D. At last I’m firmly on the road to recovery. Halleluiah!

The Alien - Part Five: The Fun is Just Beginning

I’m in recovery for another forty-five minutes and then someone wheels me back up to my room in short stay. Gary is there to greet me with a relieved smile and a positive report from the surgeon. “The doctor said there was no cancer in the lymph nodes and the tumor was extracted with clear margins. The only problem with the surgery was an allergic reaction to the antibiotic and the tape. She had to use super glue on the incision.” I laugh at idea of being held together with super glue.

A nurse comes in to ask about my pain level and returns to give me a large white oblong pill. Gary is sitting by the side of the bed feeding me water, juice, and crackers. The Saltines are tasty and apple juice has never been so sweet. A slight dizziness gradually disappears. The nurse tells me to cough to clear my lungs and move my legs and arms to keep the blood flowing. I have to be able to walk across the room and meet other posted requirements before they will let me leave. There is an itch on my stomach, but no sign of a rash.

I’ve met the discharge criteria and we are ready to leave by three-o-clock. Gary brings a wheelchair and pushes me down to the lobby. When we arrive home he fusses over me while I wrap myself in my grandmother’s quilt and settle in on the couch. It doesn’t take me long to devour a full plate of Gary’s famous mashed potatoes. Considering the events of the day, I feel reasonably well.

Sleep doesn’t come easy the first night on the sofa. My throat is raw and an irritating itch travels from one part of my body to another. It is impossible to find a comfortable position. By morning I am swollen and tender from the top of my breastbone down under my left arm to my waist. Fearing an infection, I call the surgeon’s office and schedule a four-o-clock appointment.

Because the pain medication doesn’t seem to be helping, I pull out the container of large white pills to check the dose. Down at the bottom in between all the warning stickers I see “Generic for: Vicodin – HYDROcodone/ACETAMINOPHEN.” No wonder I itch and my throat is raw – I am allergic to Acetaminophen. How did this happen? In addition to the red allergy band on my wrist and notes in my chart, at least ten different caregivers during the day were told about my allergic reaction to Tylenol/Acetaminophen. A few hours after stopping the Vicodin my throat is no longer sore and except for surgery related tenderness and swelling I start to feel better.

At four-o-clock I’m sitting on the end of the exam table while the doctor unwinds the wide bandage to check on my condition. “Swelling and bruising is to be expected especially with your sensitive skin. It should resolve in a few days. I don’t see anything to be concerned about at this point.” As she wraps the elastic bandage securely around me again, I mention being sent home with Vicodin for pain. Aware of my allergy she is horrified. We settle on an over the counter pain medication I have tolerated in the past.

On Thursday it takes all morning to get ready for a required afternoon meeting related to my new job. Although a day on the couch is preferred, Gary will drive me downtown and all I have to do at the meeting is listen to the discussion. Before my shower I notice more swelling and a large area of deep maroon bruising. The roomy button front shirt I bought before the surgery will barely close over my lopsided double D shape.

Whether it was the bumpy ride downtown, exertion from the meeting, increased swelling, or lack of a strong pain medication, I spend Thursday night roaming around the house looking without relief for a comfortable position. There is nothing lonelier than pain and anxiety induced sleeplessness in middle of the night. I calm myself with Hildegard of Bingen’s chant, “All shall be well.” Exhaustion eventually blesses me with a few hours of sleep.

Each day over the weekend I feel a bit better although the swelling and bruising does not dissipate. My sister comes over twice to do Reiki, a Japanese technique for stress reduction and relaxation that also promotes healing. Gary pampers me and brings me comfort food.

Tuesday afternoon at my one-week appointment the surgeon is visibly concerned when she sees the degree of bruising and swelling on my left side. An attempt to drain fluid is unsuccessful. “You have a large hematoma. How would you feel about going back to surgery?” There is no point in arguing with the serious expression on her face.

The Alien - Part Four: Removal

By 7:15 am on Tuesday, September 13th when we arrive at the hospital for my surgery, it is exactly 7 weeks since my first mammogram. The weight of piled up worry over those weeks kept both of us awake last night. It isn’t due to lack of confidence in the doctor or the hospital. I was born at the hospital’s old location and my children were born at the new. My family has been well served by the spirit-centered neighborhood health care institution for more than 80 years. Our insomnia was brought on by general uneasiness about surgery and the outcome of the pathology report. Except for tonsils I’ve never been in an operating room before.

We begin running the gauntlet of pre-surgery preparations. First the admitting clerk who asks me to sign stacks of forms and verifies my ability to pay; the short stay receptionist hands me a stylish hospital gown and tells me to take off all my clothes; a nurse checks for vital signs; and everyone repeats a long list of the same questions. I am fitted with a blue identification bracelet and a red allergy tag. Each person we meet along the way spontaneously praises my surgeon.

The first big obstacle is to place an IV. I know from my experience with child birth that I might be passed around a few times before anyone is willing to place a needle in my tiny, hard to find veins. The first nurse decides not to try and leaves to find someone else. I can tell Janice is experienced as soon as she walks into the room. We exchange some good-natured banter about the difficulty of the task while she wraps my arm in a warm towel to increase the blood flow. After a few minutes, with a little luck and a lot of skill, Janise gently slides the IV into my vein. We both breathe a sign of relief.

A talkative young man tells me about his plans to tour the world after college while he pushes me in a wheelchair down to radiology for the next step - the insertion of an ultra-sound guided wire localization and sentinel node tracer. The radiologist first injects an isotope in four places around my left areola. This radioactive dye will travel from the tumor to the nearest lymph nodes. The surgeon uses a beeping device to find the dye infused nodes so they can be removed and checked for cancer cells. After the tracer procedure the tech quickly finds the alien with her ultra sound wand and the radiologist inserts a 7 cm long wire into the middle of the mass. The surgeon will use the wire, the measurements from this procedure, and the results of the MRI to locate the area to be removed. As the surgeon told me at the first appointment, “I don’t ever want to see the tumor just a clean margin of healthy tissue around it.”

Back up in my room, I knit and Gary reads his book while we wait for transport to short stay surgery on the floor below. A humorless LPN arrives at about 10:30 and wheels my bed down the hall to the elevators with Gary following behind. When we arrive in the empty pre-op area, a nurse with a colorful head covering and a young woman who looks to be about sixteen are sampling chocolates from a locked cupboard in the corner of the room. More questions, more forms. The anesthesiologist although young is not a teenager. She listens intently while I explain my fear of anesthetic induced nausea and dizziness. “You have nothing to worry about. I will make sure you wake up feeling well.” A quick visit with my surgeon, a goodbye to Gary and they wheel me into a brightly lit room where the walls are lined with surgical gear. A nurse is sorting instruments as I roll by. The last thing I remember is sliding onto a narrow table.

I feel a lump in my throat and a low grade burning sensation radiating from my left breast. A disembodied voice is saying, “your surgery is over, you are in recovery.” When I open my eyes, the hands of a fuzzy clock indicate at least two hours have passed. I feel remarkably well. With relief I think to myself, “there was an alien in my body and now it is gone.”

The Alien - Part Three: Waiting

Waiting – doing nothing expecting something to happen.

My daughter’s safe and happy arrival in Santa Fe gives me more time to think about gathering a support network. While the whole world doesn’t have to know, the healing of body, mind, and spirit will benefit from a few special people willing to send positive energy my way. I start calling and emailing a small group of women – my best friend for more than forty years; my sister and aunts; two women I connected with when I worked at the library; a teacher I worked with years ago; my spiritual director; and a new young friend. Although I don’t like being the center of attention and I feel safest when I’m invisible, right now I need to be visible.

More Internet searches fill another weekend this time to check out the MRI procedure and to do research on radiation therapy. At first the news for radiation is good – no hair loss or nausea. Then a study pops up on the screen linking breast radiation combined with chemotherapy to an increased risk of leukemia. With four close family members afflicted by various forms of the disease this seemed like a real concern. I email the hospital’s breast cancer nurse immediately to get more information.

Pondering the “melon ball” comment from the surgeon adds to my anxiety about the outcome of the MRI, but the procedure itself is not unfamiliar. I remember the loud noises from a previous test years ago and the online search provides a photo of the stomach down position. I joke with a friend about the round “teat cups” which function as antennae sending information to the computer. The tech says the machine creates about 2,000 images for the computer to assimilate. With an instruction not to cough or breath too deeply, I spend the thirty minutes inside the magnet paralyzed by fear of the slightest movement.

There must be something about the alignment of the stars in the Virgo/Libra section of the zodiac. Between the middle of August and the middle of October, just about everyone I know has a birthday. Many life-changing events including our wedding and my mother’s death have happened in September. This year my favorite uncle died suddenly. Now extraction of the alien can be added to the list. There is a powerful intersection of energy at this time of year.

In August during the weeks of uncertainty before the diagnosis, I stumbled onto an ad for an interesting part time job as an arts education facilitator for a project in the public schools and submitted a last minute application. Surprised when I was called for an interview, I was even more surprised by a job offer. A few days later with surgery looming ahead - I am caught in a dilemma – under the circumstances will it be possible to give the required energy to this job and how/when/what do I say to the people managing the project?

Every year at the beginning of September we travel to the Oregon Coast to celebrate our anniversary and our birthdays. This year the six days in paradise are squeezed between an MRI, pre-surgery lab work, an appointment with the radiology oncologist, and a planning meeting for my new job on one end - the surgery on the other. By the time we start to pack for our vacation, my brain is numb. The time to relax and reconnect proves to be priceless despite the silent alien in the room.

A crisis can reconnect us with the capacity for human compassion. I haven’t even had surgery yet and I am being gently carried along by a multitude of saints . . . the love and blessings from my network of supportive friends and family; a willingness by my new supervisor to accommodate my needs so I can continue to participate in the arts project; the helpfulness of the hospital's breast cancer nurse; the thoughtfulness of the radiologist who read the MRI immediately to relieve my fears; the patience of my doctor; a careful review of my family history by the radiology oncologist who squeezed me into her busy schedule; and most of all the loving kindness of my remarkable husband. The list of people who have touched my life because of the alien has already reached fifty and is still growing.

The Alien - Part Two: Confirmation

At exactly 9 am on Monday morning I phone the surgeon’s office and schedule an appointment for 2:00 Wednesday afternoon. Making the appointment feels like progress and it calms my exaggerated fears.

Monday and Tuesday go by quickly as I am distracted by Rebecca’s preparations for her return to school in Santa Fe on Thursday morning. I am not ready to tell anyone except Gary about my news. I certainly don’t want to derail my daughter and her excitement about the new school year. For right now two people worrying is more than ample.

My annual physical on Tuesday morning gives me an opportunity to ask a longer than usual list of questions. The doctor responds to my paranoia by patiently checking me over with even more than his usual thoroughness. We both laugh when I point to the biopsy bruise and tell him I am eager to extract the alien lurking beneath.

On Wednesday afternoon, I give Rebecca an excuse about a neighborhood meeting and meet Gary at the surgeon’s office. The petit young doctor sits down across from us placing her delicate hand gently on my arm. Her first words are, “I’ve looked at the test results and I want to assure you this is treatable. I can safely say you will not die of breast cancer.” She goes on to talk about a lumpectomy and six weeks of daily radiation therapy as the recommended treatment option. “The first step is an MRI to give me more information on the location of the growth and to make sure there isn’t any other issue.” Turning to Gary she says, “We don’t want to melon ball her breast. If we see anything new, on the MRI she will need a mastectomy.” More for the worry machine to work on, I think to myself.

Although the doctor is caring, knowledgeable, and thorough, the hour-long discussion and exam followed by a 45-minute session with the surgery scheduler leaves me feeling overwhelmed and vulnerable. I walk out of the office with a stack of forms, an appointment for a bi-lateral MRI the following week, and a September 13th date for an ultra-sound guided wire localization followed by a lumpectomy and sentinel node biopsy. Whew!

Cancer treatment has improved in recent years, but I wonder what future generations will think about our response to the disease. Will they find it as barbarous as we view blood letting with leaches? Surgeons carve out parts of our tissue leaving deep visible and invisible scars, harsh chemicals are pumped through our veins, and powerful radiation beamed at our most delicate parts. I want to know what causes cancer, but of course there is no money in that line of research. What unknown hazard did I taste, touch, breath, stand next to?

The Alien - Part One: Discovery

Exposed from the waste up, I’m standing in front of a giant piece of equipment designed to smash the flesh of my meager breasts until they ooze like thick glue from a crack. In contrast to the technicians in previous sessions, this one seems blaze and a bit careless about the procedure. Zap, zap on each side then a flippant, "You will be called if more views are required." In less than ten minutes, I’m back in the dressing room. Uneasy about the tech's cavalier attitude, I make a mental note to mention my concerns to the doctor three weeks hence at my yearly physical. It had been two years since my last mammogram, plenty of time for a problem to develop.

A few days later I am not surprised when a voice on the other end of the phone explains the need for "more views" and an ultra sound. The day of the next test I have almost convinced myself it is a routine follow up due to the tech’s carelessness until a radiologist with a concerned demeanor is solemnly ushered into the tiny ultra sound room. "The image of the right breast most likely indicates nothing more than thickened breast tissue. It is the left that is worrisome. Rather than watching this I would like to do a bi-lateral ultra-sound guided needle biopsy so we will have a clear answer." My inner voice begins nervously chanting the ominous c-word.

As soon as I return home, I perform a belated self-exam of both breasts. Much to my horror, I can feel a small navy bean near my left armpit not far below the surface of the skin. “How could I have missed this?” I thought, beating myself up for a history of infrequent, less than thorough self-exams and a two-year gap between mammograms.

While I wait the twelve days until the biopsy, a ravenous search of the Internet fills the large gaps in my knowledge about breast cancer detection and treatment options. I am fully prepared for the needles and the noisy suction equipment on the morning of the procedure. The radiologist and the ultra sound technician work quickly and skillfully to complete the nearly painless procedure. Before I leave, the technician hands me two business cards, "If your doctor's office hasn't been in touch by 2:00 on Friday afternoon, you can call us for the results." Damn right I'll call.

I phone our primary care clinic at 2:01 on Friday afternoon- no results yet. Not quite desperate enough to bother the radiologist or technician, I try the records office at the imaging center - still no word. Finally I pull out the business cards and leave a voice mail message for the radiologist. Meanwhile Gary  is making the rounds in person on his way home from Friday afternoon volleyball - first the clinic and then the imaging center - no word.

When the phone rings an hour later, I listen as though the radiologist is talking about someone else while she quietly explains, “as I suspected there is a benign thickening on the right, but I’m sorry to say a small malignancy was found in your left breast. The next step is to see a surgeon as soon as possible.”

Armed with the radiologist’s top choice of surgeons, I immediately call the office only to hear a message that they closed at 2:30. Another weekend of frantic Internet research on survival rates and other titillating topics gives my mind too much to imagine. My inner voice is obsessed with “I don’t want to die.”