laurie2020

I was diagnosed with 4th stage cancer metastisized at size 7 with 2 blood clots all in my left lung and lymph nodes. I was loaded with fluid at time of diagnosing believing I had pneumonia and learning my real diagnosis. I went into emergency surgury for a perichondrial window to keep the fluid building up around my heart and had over 4 cups of liquid drained out of my back that was surrounding my lungs. This was a little over 2 years ago. My oncologist refused t give me a time that my life may expire and for that I thank him everyday. A few months ago he told me my time expected was 3 to 6 months and that others e had diagnosed with 4th stage Lung cancer had passed long ago and I am considered ever so lucky. Before I left the hospital 2 years ago I placedy life in God's hands and refused to google lung cancer. I did not want Google telling me how and what I needed to feel and fill my head with the fear of what to expect. I chose treatment and continue to attend every 3 weeks. I tell myself that I will live my life until God decides otherwise. I prepared my will, move to a smaller house and have sent these years making family monies and helping them prepare for my passing by letting them know that I am not afraid and they will move forward when I pass. I was forced to come to terms with reality the day I was diagnosed by myself in 2 separate hospitals due to Covid. All of this made me see that I wanted to move forward having a quality of life not a life of fear. Stay strong and off of Google.

I was diagnosed with 4th stage cancer metastisized at size 7 with 2 blood clots all in my left lung and lymph nodes. I was loaded with fluid at time of diagnosing believing I had pneumonia and learning my real diagnosis. I went into emergency surgury for a perichondrial window to keep the fluid building up around my heart and had over 4 cups of liquid drained out of my back that was surrounding my lungs. This was a little over 2 years ago. My oncologist refused t give me a time that my life may expire and for that I thank him everyday. A few months ago he told me my time expected was 3 to 6 months and that others e had diagnosed with 4th stage Lung cancer had passed long ago and I am considered ever so lucky. Before I left the hospital 2 years ago I placedy life in God's hands and refused to google lung cancer. I did not want Google telling me how and what I needed to feel and fill my head with the fear of what to expect. I chose treatment and continue to attend every 3 weeks. I tell myself that I will live my life until God decides otherwise. I prepared my will, move to a smaller house and have sent these years making family monies and helping them prepare for my passing by letting them know that I am not afraid and they will move forward when I pass. I was forced to come to terms with reality the day I was diagnosed by myself in 2 separate hospitals due to Covid. All of this made me see that I wanted to move forward having a quality of life not a life of fear. Stay strong and off of Google.

Today, I celebrate 18 years of life after diagnosis with lung cancer. Normally, I'd paint my toes and post. Of course after 10 years, I had to invite more feet to the photo-celebration. But, on this day, indeed, in this week my hometown is ice-bound and my planning skills have waned because my celebratory bottle of Lungevity blue nail paint is exhausted. So, no photo this year.
There are so many lessons I've learned during my diagnostic, treatment and survival journey. Two among them bear mention: The objective of treatment is life; do something you enjoy with the extension. And, if I can live, so can you. Indeed...
Stay the course.
Tom

I think I can, I think I can — I can do anything for 15 minutes.
Nothing could have prepared me for the hijacking of my body the way cancer did. How long had those mutating cells been slowly taking over my lung? Had I been feeling healthy for a year, or two, or three, on the outside while inside my chest a mass began to build and then spread.
It has taken me weeks to absorb the diagnosis. It could have been better. What could I have done to find this sooner? Why did I think it was possible to walk or run a half-marathon if I trained for a year?
Cancer changes everything.
On top of all things health-wise, it was a challenging winter. We almost didn’t make that first appointment on March 1. Snow began falling on February 28 at the rate of one inch per hour. Our driveway was impassable. We don’t own a large tractor, so we usually blew the snow into the trees with walk-behind snow blowers.
Looking at the wind pushing the snow across the driveway, I panicked. My husband wanted me to cancel the appointment. I said, “No, I will walk to the main road if I have to, but I cannot give up an appointment that could save precious time in beginning treatment.”
He dutifully dressed for the cold and began creating a path for the blade on the ATV. Eventually, he had moved enough snow for a vehicle to exit. That was only the first step of that morning’s commute. We had no idea what we could find on the farm-to-market road to Highway 1806. Depending on the wind’s direction, storms can build three-foot finger drifts across the road, making it difficult to see where the road ends and the ditch begins. Sinking into the ditch at 7 a.m. would be bad.
Thank goodness, the road appeared to be fairly clear in the growing light of dawn. Northwesterly winds were continuing to blow the snow across the adjacent fields. Traffic moved slower than usual on the main roads and in town, but we made it to the Sanford Cancer Center by 8 a.m. It was the doctor who was a few minutes late, but I didn’t care. I was on the road to dealing with my diagnosis.
In addition to the MRI that afternoon (which showed no cancer in my brain), several appointments were scheduled for the next two weeks.
First — back to “Irrational Radiology” for another biopsy. This time my lymph node at the base of my neck.
Second — after that biopsy, there would be a port placed. That’s a story for next week.
Third — I will be doing chemoradiation followed by immunotherapy. Okay. Without question, I followed along as best I could with all this information.
Fourth — A referral to a radiologist and the Bismarck Cancer Center.
Things began to happen fast. I felt weightless in the atmosphere of the clinics, my thoughts focused on accepting the fact that I might not be here by the end of the year. These thoughts were only in my head because no one said a word about survival — except Google. And we all know better than to Google your way to good health.
My referral to a radiologist began by filling out the same forms, different building, different staff, different MyChart medical portal, same me. Check the boxes — no illnesses, no drugs, no nothing, except this new cancer.
Strangely enough, when I was told I would be seeing Dr. Reynolds, I asked if it was my Dr. Reynolds who had by chance re-entered the workforce.
No. This would be a different Dr. Reynolds. Hmmmm.
This Dr. Reynolds had piercing blue eyes and I still see him nearly every day on a television promo around the time we watch the news.
Bismarck Cancer Center was a couple blocks away from the infusion center. Infusion center? I looked up the word. It means introducing a new element or quality into something. In medical terms that quality was liquid and varied from patient to patient. That experience comes later. We didn’t talk about that aspect of treatment in detail. Yet.
Dr. Reynolds said radiation would be fairly painless, until the end of the six weeks when my esophagus would be “sunburned” and swallowing would become difficult.
“Bulk up,” he said, after looking me up and down in the chair across from his. Nobody has ever suggested that to me before. I was trying to maintain my weight for my first-ever trip to Cancun in November. I had three new swimsuits and several other goodies ready to be packed into a new suitcase.
I was hoping to make it to November and not be a different size — whether my weight goes up or down. You know what the images in my mind are at this moment.
Again, the new doctor and new nurses explained what was going to happen over the next few months. Most of the information fell on deaf ears. It was only later that someone suggested recording these visits with my phone and reviewing the instructions at home. I think I was done with radiation by the time that information soaked into my brain.
Somehow, the scheduling and treatments would be happening at the Bismarck Cancer Center in tandem with Dr. Rocket and the Sanford Cancer Center.
Every week beginning when? March 20 — that’s two weeks away.
“Treatment planning takes time,” Dr. Reynolds said. “And, there are a few more things we need to do. Are you claustrophobic?”
YES. Really claustrophobic. Remember the story about burying people with a bell back in the day?
Radiation didn’t involve being slid into a tube like the MRI, but it would take place on an open bed like a CT scanner. I can do that, I thought. That was NOT the gist of that question about claustrophobia.
The doctor ran his hand over his face ear to ear and said they would be building me a plastic mask. To hold my head still. Accuracy was an important improvement to current radiation treatment.
Okay, a mask like the ones we wore during Covid. I can handle that. I’m not that claustrophobic.
“You mean like with a 3-D printer?” I said. He seemed puzzled at my question. I found out why a wee bit later.
After a short wait, some young technicians appeared to escort me to a room I would become all too familiar with in the near future.
While they did whatever they did to prepare me for what came next, I stood by observing the large area with cupboards and an enclosed “office” with large windows. In that area were computers under very low light. They prepared the scanner, which didn’t appear to be very scary at all, and collected the supplies needed for the next steps.
Using a step stool and some helpful hands, I laid down on the scanner bed — a metal or hard plastic mattress covered with a clean sheet. We worked together to make it comfortable and made sure my body was positioned correctly.
And, yes, when offered, I would love a warm blanket. I’m always cold.
Then came building the mask.
The mask was not a mask at all like I envisioned.
I watched from my prone position as one of the two techs unwrapped a large piece of plastic with blue trim about an inch wide. This perforated white sheet reminded me of that new packing paper that folds like little accordions to protect things made of glass. I missed seeing the snaps around the outer edge.
This sheet was warmed somehow somewhere beyond my field of vision until it became pliable. With a person on either side of me, they laid the sheet like a shroud over my face. It felt great, like being in a spa for a kinky facial. While it was still warm, they used their fingers to shape the plastic around my facial features, opening a small area around my nose. The girls took their time and carefully smoothed the plastic from the top of my head, over my face, around my neck to my breast. Their touch was light and soothing and it was a pleasant experience.
Then they let it cool.
The next step was tattoos. These tiny marks would be used to position my torso so the radiation would accurately enter my body where it was most needed. This would require the use of the computers originating from behind the glass-enclosed area.
When all the instruments were adjusted, they were ready for the test scan, they brought it back. The mask. My plastic likeness was snapped down on the scanner bed pressing my head and neck in place with a rather loud sound. I panicked. I felt like I was choking.
I waved my arms and the mask was quickly removed. Twice. I couldn’t do it.
It had to be done and I knew it. But the thought terrified me.
“Would you like something to hold in your hands?”
“Yes, I think that would help.”
I could not have been the first person to freak out in this situation because they knew how to talk me through the next steps.
The girl to the right of the platform (it didn’t deserve to be called a bed) allowed me to hold her hand for a short time. It probably didn’t make her job any easier to work with only one hand.
She had to leave, so her hand was replaced with a rubber ring. However, I was not allowed to hold it across my body like I wanted with both hands because that would interfere with whatever tattoos they were planning. My arms had to be by my side.
“I can hold onto the bed,” I said white-knuckling the edges of the platform. That wasn’t a good idea.
“We don’t want to pinch your fingers.” So they added handles like joysticks on either side like grips you would use when taking off in your rocket ship as the G-force presses down on your body.
“I can do this. I’m ready.” I allowed them to snap the mask in place gripping the handles and slowing my breath so I wouldn’t cough. 
Somehow, I vaguely remember how I made it through the third time they snapped that mask into place. As unpleasant as the moment was, I concentrated on the praise music playing in the background. 
The thing about most songs is the length is approximately three minutes. They said my time under the mask would be about five minutes so I counted songs and envisioned Jesus right there in the room with me. It took what felt like an eternity as I counted the seconds of each tune until they came back and quickly released me from my prison.
I made it.
After the scan, which I am assuming required computer-generated positioning to match the areas in the PET scan that lit up bright pink in the middle of my torso. (Yes, I accidentally saw the scan at this appointment on Dr. Reynold’s computer.) As he turned the computer screen towards me, his exact words were, “You are really lit up.”
“Thanks.”
I was okay with glowing in the dark on the outside, but did not feel very comfortable about the fluorescent pink area glowing in the middle of my chest.
To assist with positioning the “beam,” directly at those pink areas, those two kind and patient technicians dropped some ink in three places across my torso and poked it in place with a needle. The first drop and poke didn’t hurt, but a large black and blue mark appeared around the area. The second drop was lost in my belly fat, but the third must have hit a nerve because that poke hurt.
Once home, when I looked for those tats, the marks were so small I could barely find them after scrubbing the Sharpie’s dots away in the shower.
“For that kinda money, I would have expected larger tattoos,” I said to no one within earshot.
 

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.
 

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.