Karen_L

Well, this was it — the beginning of what would be several months of “dis-ease.” It began with that phone call from Dr. Russell.
I never met Dr. Russell. He was the doctor that my primary care physician called right after the first suspicious x-ray. He called Feb. 23 and said there was nothing he could do for me. It was cancer.
“Call an oncologist.”
“I don’t know any oncologists,” I said.
“I will ask my nurse to schedule an appointment for you.
“Thanks,” I think.
Next on the agenda was to find an oncologist. Do I know one? Why would I know one? The only person close to me that had cancer was my Aunt Alice and she lived for 20+ years after her diagnosis. My Uncle Ed had a big party for her. He said rather than wait till a funeral we were going to celebrate Alice while she was still alive.
Hey, if I survive the next eight weeks, maybe that would be a great idea. To have a party, see my friends before I became too weak or ill to be around. I want to go to my own funeral.
I miss her so much.
Dr. Reynolds was her doctor. I guess I did know an oncologist. He went to my church and we went on youth ski trips together as chaperones. He told me Aunt Alice was a cancer miracle. I believe she was here so long because she cared for everyone else above herself. She never complained and rarely said anything about her pain. She selflessly prayed daily for all her children, nieces and nephews. Alice was well-known in the community because she continued to work as an ER nurse for many years while fighting cancer. Now it’s my turn. I didn’t feel very hopeful at this moment in time. I felt adrift in a world I never expected to be a part of.
A nurse named Kayla called me the next day. She told me about nurse navigators; a term unfamiliar to me. Wow, first the PET scan space ship and now a “navigator.” I needed a pilot.
It’s a cool name for someone helping you find your way through everything that you don’t understand about health care. For me that meant a lot. Having experienced nothing but the best of health for 66 years, hospitals and clinics and tests and doctors are on an unfamiliar planet.
When I stepped off the PET platform Thursday, I entered “space — the final frontier.”
The nurse navigator called and said she would call back with an appointment. The alert that new information was in MyChart came before that second call. A person shouldn’t always read those notes before talking to a navigator. Kayla’s notes were “regarding incoming urgent referral to Dr. Kurniali for newly diagnosed lung cancer.” Dr. Wos was on call that Friday for urgent concerns — declined. Dr. Kurniali would return on Monday.
What did that mean? They declined to help me? Were there that many spaceships with patients circling the planet waiting for a turn to land in a doctor’s office? It was a long weekend for sure.
I took my phone off silent, something I never do. It’s possible I held it in my hand the entire weekend waiting for a call from the clinic. On Monday, the nurse navigator did call. Finally.
She said there was a new doctor in town taking patients. Just arrived from Mayo. The spelling of his name was difficult to pronounce so she said to call him Dr. Rocket. Seriously? First the space ship, the navigator and now Dr. Rocket. Coincidence?
The first oncology appointment was March 1 and all 70 minutes packed with more information than I cared to know. It’s difficult to listen to someone when there’s a tape running in your head, “you have cancer, you have cancer.” What Dr. Rocket and his nurses explained to me unfolded hour by hour during the next two or three weeks.
The one thing I do remember not seeing the PET scan, I didn’t want to know how much cancer my lung could contain. Without the scan Dr. Rocket simply said, “you have Stage IIIc lung cancer.”
“What? It couldn't be Stage I or Stage II? It was already at Stage III, that’s one step below Stage IV.”
But, those words were not as scary as, “lung cancer likes to move to the brain, we need to make sure the cancer hasn’t spread.”
Wait, what? That’s all I needed. An MRI was scheduled for that afternoon. After plowing through the remains of an overnight snow storm to get to the first of many 8 a.m. appointments, our stay at the hospital was extended by four or more hours. There was no choice, we had to get it done.
MRIs freak me out.
As silly as this sounds, there are two things that cause panic attacks, fear of heights and fear of enclosed places. When we ski, which I love to do, I white knuckle the chair lift ride to the top of the mountain. But, my biggest fear is being buried alive in a small box. You know like you read in some many horror stories.
Naturally the nurse said I could have something to relax me. Thank goodness I had a driver. Medications, even over the counter pain relievers, were used sparingly at our hours. A controlled substance was sure to quickly put me into orbit. We, the nurse and I, after discussing my sensitivity to drugs, decided on .5 mg of Adavan instead of a one milligram tab she first suggested. It was a wise choice. The prescription was for two tablets just in case.
There was plenty of time, and no dietary restrictions, for lunch before the MRI. Instead of pancakes we had Panera. I should have gone for pancakes. Pancakes seemed to sit better with my churning stomach.
We waited for the prescription to be filled before heading to the MRI building across the street from the hospital. We were early. The nurse called my name before we had a chance to settle in, so I swallowed the first Adavan tablet. Then, more fill-in-the blanks again. Same questions, different clipboard. Always name and birthday.
During the intake conversation, I said something opening the door to the nurse asking, “where are you planning on going?” She didn’t mean shopping or out to eat.
“I know where I am going. I’m on a fast-track to eternity.”
“Would you like me to pray with you?”
“Absolutely.”
The next 45 minutes were spent trying to stay awake for the MRI. It was a struggle and I paid for it later in stiff muscles from holding myself upright dressed in one of those flimsy gowns and sitting on a straight back chair. Thank goodness I refused a one milligram tab of sedative. The staff would have had to pour me on the MRI platform.
It was time. The young man who helped into the next room had a familiar voice. Maybe it was his face as his mask was not properly covering his mouth.
“I know you from somewhere.”
No response.
“Did you go to BSC?”
“I’m not from here.”
“Hmmm.”
He was explaining how the test was going to work. As usual, lay down, really loud noise, inject dye, really loud noise, finished. I have had an MRI before.
“I can do it.” Newer machines are not the dark tubes that cause such panic I have to visualize happy places or count backwards from 100 to survive. I keep telling myself if I move halfway through the scan, the techs will have to start over and that would be bad. So I endure the 20-25 minutes. It was over.
As, I was positioned on the machine’s hard surface, it hit me.
“You buy sauerkraut from me at the farmers market.”
He conceded. “I don’t usually like people to know I work here. I still have some of that sauerkraut left.”
The MRI was loud, even with ear plugs, loud. I was very happy when that ended. I was thankful for the arm offered as sitting up too fast makes me dizzy, even before I take any drugs. This young man with the southern accent walked me to the dressing room just in case.
“Hey,” he said before going back to work. “Do you mind if I tell my girlfriend I saw you.”
“Not at all.” Nothing would make me happier.
As usual, the test results were in my online medical chart by the time we got home that day. It was a long day, but not so unbearable. The paragraph of findings at the bottom of the narrative included many unfamiliar words and five sentences that began with no.
The first ray of hope — my brain was free and clear of tumors.

PET scan day. Another day, entering the unknown. The weather was awful, so we left for Bismarck early. My desire to get these exams over and done outweighed my impatience at sitting in hospital and clinic chairs for hours at a time, staring at the walls, watching solemn faces entering and exiting. Although arriving early to appointments, we never had to wait long to enter the inner sanctum of the hospital, those closed doors to the great unknown led by people much younger than myself who always want to know your name and birthdate.
About five minutes from the hospital parking lot, the radiology tech called to make sure we would make the appointment. Snow was falling, and it was blustery, but not impossible, to navigate the streets. The problem was the snow in the driveway leading to the county road and then the county road connecting to Highway 1806. 
It took some time and man power to clear a path from the garage to the road. County plows had miles and miles to clear, and many times it was late afternoon when they reached our neck of the woods. This winter had started early and was relentless, with snow piling up around around our yard and the wind sculpting a most beautiful prison wall around the house. 
Our house has three exits. Thie first challenge of the day this winter was finding a door that the wind hadn’t packed full of snow overnight.
But heck yea, we will be there. I’m not going to miss this appointment. But, with this wild winter — storms and snow, and travel warnings nearly every week, there were more than a few moments of panic as our path to the hospital began shrinking with every passing weather alert. 
It’s North Dakota. We have lived here all our lives, and cold, windy, snowy days don’t always mean you can’t get around in town. But living in a semi-secluded place without a farm tractor to move those drifts became an issue.
The weather was much better Thursday than Wednesday when we went for the biopsy. I could NOT miss either of these tests. 
“Absolutely, we will be there in about five minutes,” I said. “We will be there 30 minutes early for the appointment.”
It paid off to arrive early. After a very short wait, a young man in a mask, named Max, called my name.
No one really explained the PET scan. Maybe I wasn’t listening, I found some notes about not eating or drinking six hours before the test. I knew I had to have an injection and wait for the solution to make its way through my body, followed by the scan. It would probably be two and one-half hours at best. I longingly looked at the water fountain over my shoulder as I said goodbye to my husband and followed the young man down a long dimly-lit green hallway. It was cold. Really cold.
We entered a room, or sort of a room with an industrial lift. You know, a platform with a railing like construction workers would use to paint a ceiling.
“What’s this?”
“Can’t have you guys walking up the stairs now, can we?” Max said. He all but strapped us in with safety harnesses, and up we went. It was a smooth ride. As we rode the lift a mere four feet to a bank of computers, another man in a mask turned his chair around but didn’t say a word. I had no idea if he was smiling or not. That’s the trouble with masks.
To the left was what looked like an airport jet bridge. You know, like an airplane connected to the walkway connected to the terminal. It was even colder in this room, if you could call it that. At the end of the jet bridge, an empty scanner like the ones for the CT scan took up a substantial area in a dark room. I found out later that it wasn’t a room but a semi truck trailer in disguise. It looked more like a space ship.
Max guided me to the right to another very industrial-looking room. Once I settled in one of two chairs separated by a divider, he drew some blood, checked my sugar and put an IV in the vein in the crook of my arm. He carefully put on a new pair of rubber gloves and lifted a canister from a heavy metal cooler in front of yet another couple of computers with ever moving screens and blinking lights. The room has an eerie atmosphere under the fluorescent lights and bare walls. The radioactive symbols, the lights, cold and darkness were reminiscent of the 50s sci-fi movies I watched on the old movie channels. Remember, I love Star Trek.
Most websites will tell you you receive only a small amount of radioactive sugar called fluorodeoxyalucose-18, FGD-18 for short, it sure seemed like a lot more in my head. Thank goodness once the radioactive glucose was injected, the IV was removed. I hate those things.
I’m sure I commented more than once on the chill in the room. Max grabbed a heated blanket, helped me spread it over my legs, and drew the curtain. He said he would return in 45 minutes. UGH.
The chair reclined but not enough to be comfortable. I was cold and not prepared for the starkness of the room. The computer was the only light I could see. The numbers went up and down with no rhyme or reason. 
I tried to close my eyes and relax. Thank goodness I didn’t notice the clock on the computer until at least 15 minutes had passed. I waited with my eyes closed, hoping the time would pass quicker. Max came back, but not for me. It was only then I realized someone was waiting behind the curtain hiding that second chair next to me.
If the scan lasted 30 or 40 minutes, that meant at least 30 minutes till my turn in the scanner. This experience has been a lesson in patience for sure.
After more time had passed, Max returned and asked if I wanted to use the bathroom before the scan. I said sure, at my age not wanting to miss an opportunity to pee.
Rather than go out past the waiting room where my husband was reading, we went down another hall, a locked elevator, a couple of wrong turns and a restroom with that same circle in yellow and maybe red. You know, the radioactive warning symbol. I don't recall right now.
PET, or Positron Emission Tomography, is a nuclear imaging technology. According to a Stanford Medical website, “Nuclear medicine is a branch of medical imaging that uses small amounts of radioactive material to diagnose or treat a variety of diseases, including many types of cancers, heart disease, and certain other abnormalities within the body.” 
Thinking about radioactive materials, on the way back to the scanner I said, “Might I glow in the dark?” 
Max said, “Sorry, no.” Oh well, I tried. 
Obediently, I followed him across the jet bridge into the space ship, then into the scanner and out again. It was painless. The platform moved ever so slowing from the top of my head to my knees pausing at intervals to complete a scan section, or at least that’s what I assumed. They said I did good, meaning I didn’t wriggle around. I got up and we went down the lift and out the key-coded door to the waiting room.
Much to my surprise and joy, another friend, Diane, had taken the time out of her day, made her way across the snowy Missouri Interstate 94 bridge and kept my husband company during this unknown ordeal. There she was, and I was overwhelmed with gratitude. It meant a lot to me that she showed up and agreed to go to lunch with us before she was off to donate blood.
I had been craving pancakes for days.
 

We will soon know what’s inside my chest.
My friend Shelley met us at the hospital at 7 a.m. on a bitter below-zero Wednesday, Feb. 22. The sun had not yet met the horizon, and the city was beginning to wake up. The hospital light looked dim in the surrounding dark, one of the only fully lit buildings downtown. Today’s patients and staff were trickling in by ones and by twos.
There were three of us. It was biopsy day.
After checking in, I stared at the woman behind the counter for a minute, confused. I needed directions to the lab and then IR Radiology. Not knowing where anything was located caused a few strange looks from the staff. How was I to know? It had been five years since I was in the hospital for a SVT ablation, and that took place across the street at the other hospital. And, what was "IRrational Radiology?"
The whole day was efficient, to say the least. Wait time for lab was less than 15 minutes. The person drawing my blood was roly-poly and talkative. I tried not to engage. It was a somber, scary day for me. As the days passed ever so slowly, I found talking had became more and more difficult. The cough was deep and painful. Sometimes it felt like I would never catch my breath. Fatigue set in. I was grateful for a good night’s sleep before this procedure.
The unidentified mass was in my right lung. I usually fell asleep on my right side, curled up, knees to my chest, until my husband came to bed. At that time, I switched sides to avoid an accidental elbow to the face. Eventually, I had to learn to sleep on my back.
Although Dr. Curl told me later that there was no way I could have been squeezing my lung by laying on that side, I believe it did. However, sleeping on my right side became increasingly uncomfortable. My lung cried out in protest. The sound was more a protest than a wheeze.
During an afternoon nap, which soon became a daily routine, I began batting at my pillow, thinking there was an insect buzzing near my right ear. Winter’s cold in the high plains usually meant the end to flying pests — it was my lung — crying.
After the blood work, the three of us made our way to the inner sanctum of the lower level of the hospital. Somehow I avoided eye contact with the one person we knew in the entire hospital who happened to be waiting for the same elevator. Darn. I wasn’t really ready to share. I’m still not sure about sharing, especially before knowing what was going to happen to me. I didn’t want sympathy or questions for which were still no answers.
We barely had time to settle into the waiting room before being called back to prep for the biopsy. First, the hospital gown; more like a half of a hospital gown. After all these years, you would think they could come up with something more comfortable and covering then the thin, washed up tie-in-the-back gowns that you can never really tie properly. One staff shared their thoughts on the gowns worn and faded condition. It was so people wouldn’t steal them. I guess that makes sense. I laughed for the first time that morning.
I took my position as the center of attention on chair behind the curtain and looked forward to the heated blanket; but not looking forward to what came next, the IV. It creeps me out to have that needle thing on the back of the hand, although my veins are perfect for needles — close to the surface of brown spotted old hands bulging with blood. For years, nurses and phlebotomists openly admired my veins.
Because the biopsy required me to put my hands over my head on the CT scanner, we opted for the IV to be placed further up on my wrist. Even creepier. My support group of two stopped by for a few minutes before I was escorted into the dimly lit scanner room. My spouse and friend listened carefully to the procedure instructions, followed by the wait time. Wow, the biopsy was over in a New York minute, but I had to stay until the puncture wounds sealed and the staff made sure my lung didn’t collapse — two or more hours. In the event something would go wrong it would mean an overnight in the hospital with a tube to inflate my lungs. I think they went to breakfast.
Never having thought much about how lungs, filled with God’s breath (I might remember to talk about that later), are the ultimate source of life.
After that first x-ray, before I knew about the biopsy, I Googled lungs.
Lungs are funny organs. One has two lobes to accommodate the heart, and the other has three lobes. I heard they look like North Dakota’s winter trees, bare branches of all sizes shaped like an oval. I was surprised to learn after the biopsy, lungs are much higher on the back than I expected. I didn’t know what to expect. I never gave it thought until now.
Under the influence of the IV sedative, before they carted me off to the “room,” I asked the doctor to remove his mask. I wanted to see the face of the man about to stick a needle in one of my precious lungs. He was quite handsome, and very young.
In the scanner, a barely lit room, face down with my hands over my head, I realized what day it was and said to the young lady, the only person in my field of view, “It’s Ash Wednesday.”
“What?”
“Ash Wednesday. You know, the beginning of Lent. The 40 days of Lent (not counting weekends) before Holy Week and Easter,” I explained.
“Oh.” I don't think it was on her radar.
The biopsy was painless and over in a very short time. I waited back in my curtained cubical. My lung was fine, everyone was fine. No hospital stay or complications.
“This isn’t so bad,” I thought.
We heard nothing about the biopsy. The next day, Thursday, Feb. 23, was PET scan day.
It occurred to me at this moment, Ash Wednesday, this day was the beginning of my Lenten journey. I did not emerge from my “nest” until Easter dinner at Ernie’s, 46 days later.

I’ve been raging against scam cancer cures for almost 2 decades. Now I learn there is an expanding for-profit hospice industry that is transforming hospice care into a world of fraud and incompetent “care”.
Please read this November 28, 2022 expose in The New Yorker Magazine titled For-Profit Hustle.
This forum exists to provide information and comfort to those diagnosed with lung cancer. When facing slim odds at the end of my treatment rope, I was comforted knowing a reputable and caring hospice provider would ease my end-of-life struggles. That was nearly 20 years ago. Things have dramatically changed, and this change is frightening!
Here are excerpts from the expose.
Hospice care is sold as alternative medical care. For profit hospice providers bribe physicians to bring new patients. Social media is mined to identify and enroll phantom patients. You might be surprised to find yourself enrolled in hospice! False Claims Act settlements resemble a protection racket: hospice executives keep their jobs, companies keep billing Medicare, whistle-blowers and their lawyers get a cut, and Justin Department attorneys cash in by moving to defend companies they once prosecuted. Hospice fraud trial judges are on the take! Turnkey-ready hospice business in Montana, Texas and Tennessee are on sale, now! How do we know a for-profit hospice provider is legitimate? After reading this expose, I don’t. Be very, very careful investigating a hospice provider. Find out who is the medical director. Ask every member of your medical team if they know the hospice provider and medical director. Ask if there are complaints. Run away from someone selling hospice care.
Be careful out there!
Stay the course.

LexieCat joined us on June 29, 2017 after taking advantage of low-dose CT screening for folks at risk for lung cancer. That test revealed a small highly suspicious single nodule that was surgically removed. She had a successful lobectomy; we all hoped she was one and done.
Lexie, a screen name for Teri Garvey, was a district attorney in Camden, NJ. In my younger years, Camden, across the Delaware River from Philly, where I lived, was an industrious town bustling with shipbuilding, soup making (the Campbells Soup Company), distilling, and iron working. The deindustrialization of America hit Camden hard and when the jobs left, crime moved in. Camden, now a hard-edged town, made enforcing the law a dangerous occupation. But Teri was a tough lady, fearless, courageous, and dedicated to justice.
We met in person during the 2018 LUNGevity Summit. She a lawyer, master of words and ideals, and I the engineer, entrenched in physics and things, discovered a fond friendship. Summits are our “shining city upon a hill”. Surviving lung cancer is a mighty forcing function. Our bond of survival transcends differences.
Teri became a bastion of support for our forum. A witty quip-master, her parody of new drug names was quintessential Garvey—“…it makes me think of Buzz Lightyear: “To Imfinzi and beyond.” On starting combination chemo with immunotherapy, she offered: “My motto, walk softly and carry a big drug.” After a clean scan report a member, knowing of her broken collar bone, suggested she not do a happy dance. Teri responded: “Sadly, you know me all too well. [My] Childhood nickname—‘Princess Grace.’”
Nearly 3 years after surgery, a scan showed tumors in her lung and sacrum. Her second-line treatment in September 2020 was combination chemo (carboplatin, Altima and Keytruda). Scans in April 2021 showed progression. She decided to join the arduous and risky Ivoance Tumor Infiltrating Lymphocytes (TIL) trial which ended early for her after 5 of 6 scheduled infusions. A good news scan was joyfully celebrated in July but by October, cancer cells were found while draining a pericardial effusion. Her defenses down from the TIL trial, Teri struggled to return to good health. She experienced a series of exhausting hospitalizations from October though the New Year that sapped her energy but not her fortitude. Cancer was beating her body not her spirit. In a private message, she sent me this photo with the quip: “I finally love my hair!” Teri chose hospice care on February 19, 2022. She passed surrounded by loved ones on February 25th.
Teri was one of those very special people I’ve met on my life’s journey. Like so many, her diagnosis was a surprise. Her attitude after diagnosis is one to emulate. Teri told me lung cancer would not change her. She lived every minute of every day caring for people, seeking justice for victims, and helping the unfortunate. She told me she chose the risky TIL trial because it might help someone down the road. It might indeed.
Stay the course.