Sue BB

Thank you. I decided to go to Mayo, and wow things have been happening fast, we are leaving today for the first five appointments. I do have radiation schedule here next week, but I will forgo that as I am meeting with a neurosurgeon, oncologist and radiologist plus one more doctor I cannot recall at the moment. I’m terrified at the prospect - my balance is so bad I fell into a wall and stubbed my toe. My husband thought something happened to me the next day as I left a trail of blood from the bathroom to the bed. Kinda funny. The black and blue mark by my left breast not so funny. I could have nailed my port and then ugh. We are going to do some genetic tests, and I heard that the peeps in Mayo may have some new technologies for me. I hope so. I have a pit in my stomach and my children are really worried. Thanks for keeping in touch. I need the connection.

I just had an MRI after experiencing two weeks of increasing vertigo. It shows five tumors in my brain as my lung cancer has metastasized. One is nearly an inch long. How do I deal with that and who do I seek for advice. I will be seeing my oncologist at 8 a.m. tomorrow morning for next steps. I was feeling so good and so hopeful until my last infusion on the 19th of December.

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.

Two weeks. That's 14 days x 24 hours before my next doctor’s appointment. Actually, not with Dr. Rocket, but once again with “Irrational” radiology. In case you haven’t figured it out, the words in quote markets in the middle of a sentence could be something I made up. Just saying. Waiting to see what’s happening to your body isn’t easy when you can’t see inside. I was anxious to begin treatment and get it over with, but I was gently reminded that treatment plans take time and preparation. Thus began my next adventure on Planet Cancer — circling the planet in my tiny capsule until permission to land. I had no idea where I was going to land or what was happening next. In the meantime, I did what everyone warned me NOT to do — Google lung cancer. First, I tried to decipher the written notes from my medical doctors and technicians and tried to understand my test results. These are a few words I learned: Metastatic — this means cancer has spread to a different part of your body part than where it started. Grossly normal In medical terms — means not seeing anything abnormal on an imaging test. but there is some limitation in the evaluation. Unremarkable — describes the report as normal, which means that there is nothing to report. Nevertheless, it's a very powerful word used by radiologists that is helpful for medical experts. In the case of unremarkable meaning, there is nothing to worry about. It reflects that the patient is fine. Then there’s the opposite of unremarkable — worrisome. These are symptoms that cause distress and concern. Yep, distress and concern on my part, coupled with a deep and painful cough, kept me up most nights wondering if I would be gone by the end of the year. From February on, it was easier for me to breathe while sitting up on the new recliner sofa with my new fleece blanket, new aqua spa robe, and sometimes penguin pajamas. It’s the middle of the night. What else was there to do besides listening to the Calm app rainstorm and dreaming of summer, tuning into a Stephen Armstrong sermon or Googling lung cancer? (Insert swear words here) I didn't know what cancer was or really where it came from. This is what I learned. Lung cancer is the leading cancer killer in both men and women in the U.S. In 1987, it surpassed breast cancer to become the leading cause of cancer deaths in women. The five-year survival rate for lung cancer is 56 percent for cases detected when the disease is still localized (within the lungs). However, only 16 percent of lung cancer cases are diagnosed at an early stage. For distant tumors (spread to other organs) the five-year survival rate is only 5 percent. More than half of people with lung cancer die within one year of being diagnosed. Lung cancer is by far the leading cause of cancer death in the US, accounting for about 1 in 5 of all cancer deaths. Each year, more people die of lung cancer than of colon, breast, and prostate cancers combined. According to the American Cancer Society, lung cancer — and lung cancer caused by asbestos — is the number one killer, with 131,880 estimated deaths in 2022 alone, making it three times deadlier than breast cancer. I realize that October is breast cancer awareness month, and I am not trying to negate all the good that has come from pink campaigns, however, it was a surprise to me to find out about the cancers affecting people under the radar. Besides being the leading cause of cancer mortality, it receives far less research funding than any other cancer. There are two types of lung cancer Non-Small Cell Lung Cancer and and Small Cell Lung Cancer. Mine is NSCLC, the most common type diagnosed. It’s attributed most often to smoking. We grew up in the 60s and 70s and smoke was everywhere. We were laughing, all though it’s not funny about how the last four seats in an airplane were the designated smoking seats. The saddest part about lung cancer is about one-third of all diagnoses happen when the cancer has reached stage 3. The five-year survival rate for advanced-stage NSCLC is 33 percent. Everyone is different and responds differently to treatments so with the research on any cancer, survival rates continue to increase. That was good news. It’s uncomfortable not knowing what’s going on inside my body. In my mind, I imagined I would not be alive by the end of the year after that first doctor’s visit. I began preparing for the worst which included knitting hats to cover my bare head and keep me warm. There were visions of hospital beds with IV drips. I told my family I wanted to sleep in my high tunnel when that time came. But here I am, sharing these experiences and trying not to Google my disease anymore. Instead of focusing on dying, I am trying to focus on living. Each day, because each one of us only has the present. My friend Shelley said, “Cancer doesn’t kill people, hopelessness does.” This week, I leave you with this: May the God of hope fill you with all joy and peace in believing, so that by the power of the Holy Spirit you may abound in hope. Romans 15:13 My hope begins with every sunrise, and this thought about dying, “Not today God. I got shi_ to do.” (Pardon my French).

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.

Wow, I can hardly believe this. I find that when I tell someone I have cancer, they automatically think it's breast cancer. It's like lung cancer doesn't exist and yet it kills more people. How can that be? They have breast cancer support groups here, but nothing but a general session for all other cancers. I am finding tho that there are people out there in my situation coming out of the closet.

Without opening my eyes, my first conscious thought was, “I have lung cancer.” Somehow, my life began to blur and my mind moved to going over every detail of the past two months. At this point the word cancer didn’t seem etched in stone, but I knew something was not right. I didn’t have any idea of what, or how much, or what happens next. I did feel the numbness of shock at the news. During the warm weeks of December, before I caught my husband’s cold, I walked two miles everyday in the sunshine. Sometimes, I ran for short bursts to build my stamina. I love to run. It was glorious. Around Dec. 22, or maybe a little earlier, my coughing began. In January, my walks were shorter, but my excuse for shorter walks was the north wind, not the dry, irritating cough. It may have been a beautiful day behind the trees protecting our property, but once exposed to the wide-open fields of corn stubble and snow drifts, I felt the north wind make its inevitable appearance known. Walking down that road, alone in an endless winter wonderland, provided time to think about things, unwind, be creative or admire the early sunsets full of winter whites, oyster shell blues and pinks. It was the season of snow, and the winds sculpted glistening white waves full of sunshine sparkles. North Dakota winters are beautiful. The cold makes your cheeks blush and feel like being a kid again. You know like when your mom says, “Why don’t you go outside and get the stink blown off you?” What thoughts go through your mind when the unknown happens intensify in the chill air and isolation of a healthy walk. I didn’t know what to think or even how to talk about what would happen next. Trying NOT to Google any more information in the five days until the PET scan set for Feb. 15, I ran through list after list of how this news would change my life. Heck, I don’t know what I was thinking would happen, but how could it be good? How could it end well? My friend Holly had died about a year after telling me she had lung cancer. Was that my fate? I was preparing for the end and hadn’t even had a full confirmation diagnosis yet. I knew something was wrong with my body. I had felt it in late December when I began doctoring for the dry unexpected cough. We went through the usual discussions and meds knowing that I was a very healthy old lady. Or at least until now, I had been. Rarely did I visit my doctor outside of the usual checkups. But here I was. My doctor and I decided the cough was not contagious and it was okay to go to South Dakota for the birth of my granddaughter. I remember telling my doctor something was not right. “You know,” I said. “Like when I was young and went home for a visit and told my dad, “there’s something wrong with my car. I can feel it.” He never believed me until I was stranded somewhere with a broke-down car. The cough did not disappear by the middle of January, so we went with an antibiotic. At the end of January I went back to South Dakota for a week, and the cough seemed to be coming from an area deeper than before. I made the next appointment. We decided a second round of different antibiotics (I am allergic to penicillin) and a chest X-ray were the next logical steps. We were looking for pneumonia. I filled my prescription and was home. It was after 5 p.m. when the phone rang with a “medical” number on the caller ID. It was my primary care physician. Was I holding my breath because it was apparent something was wrong? The radiologist said something much worse than pneumonia showed up on that X-ray and suggested a CT scan. You know, to further investigate. It was cancer, she said. Going out of her way to help, Dr. Curl called a surgeon cohort. She reached him at home after hours and asked him to take a look at my x-ray, or maybe the CT scan, as soon as possible. Somehow I cannot recall and there’s no documentation about this conversation anywhere. Could surgery rid this “thing” from my lung? His name escapes me at this time, but he personally called me and said there was nothing he could do, it was cancer and I should call an oncologist. “I don’t know any oncologists.” “I will ask my nurse to schedule an appointment for you.” However, before I saw an oncologist, there was the upcoming PET scan. It was difficult to not Google the possibilities. Waiting was the worst. Trying not to get ahead of the doctors was impossible. I was stunned and preparing to accept my fate and die. I had joked about my cough being lung cancer with my daughter. She told me to just “shut up.” I softly brushed by the topic with my husband saying, “it is what it is.” It is? It is what? We had no one in our immediate family that had cancer. How could this happen? How bad was this thing in my lung? The CT scan confirmed everyone’s initial impression of that x-ray. Somehow, I was preparing to die not knowing anything else, including what was coming in the next few weeks. Here I was for the first time in my life, stranded on the island of the unknown, with a broke-down body.

Oh Tom, at the time, all I could do in the middle of the night was write… it eased the pain and numbness I felt because I still cannot believe this is happening to me. I am so glad I found this site. Good information indeed, but I what I see is hope that I might too live more than a year.

As Peter Marshall said, “God will not permit any troubles to come upon us, unless he has a specific plan by which great blessing can come out of the difficulty.” January’s weather was temperate, and the trip from Huron to Mandan was uneventful. It’s becoming a shorter drive every time I travel the same road to Jamestown, then down Highway 281 to Aberdeen, SD, and onward to Redfield, and then Huron, SD. Of course, it’s way more fun with my granddaughter riding shotgun, but I hoped to make more trips down to see her new baby sister in February or March. The doctor’s appointment made before I left Huron in January was scheduled for Monday, Feb. 6. I always enjoy visiting with my primary care physician. I’ve know her since my days as the editor of The Mandan News from 2001 to 2009. We agreed on not taking too many medications and more on a healthy lifestyle, so my visits were usually annual checkups with mammograms. That changed in December of 2022. I have taken more antibiotics and been to see her more times in early 2023 than the last 12 years. The cough had worsened in January. It was time to dig a little deeper with a chest X-ray. I don’t know if I have ever had a chest X-ray. If I did, I didn’t recall. The doctor looked at the negatives and said the cloudy area appeared to be pneumonia. Another round of antibiotics. Later that day, the X-ray tech read more into that cloudy spot. In his words, "There was a mass-like density and mild collapse of the right upper lobe" of my right lung. He recommended a CT scan. Dr. Curl ordered it immediately and scheduled for Wednesday, Feb. 15. Happy Valentine’s Day. Feb. 14 came and went without flowers or chocolate. It didn’t matter. The first CT scan was the next day, and it was all I could think about. I had never had a CT scan before. Thursday, I went to see my friend and “life coach.” The session was not any particular topic, just a check-in. Sometimes our conversations are so great I have to be escorted to the exit. However, this day, rather than scoot me out the door with a hasty goodbye, my confidant stood at the end of the hallway by the door leading to the concrete stairs. Without warning, as I passed close enough, she hugged me warm and long. After releasing me, I looked at her and said, “we didn’t schedule?” “I’m leaving town next week, but text me.” “Is that acceptable?” “Yes. Let me know what happened.” What happened is less than 24 hours earlier I read a radiology report that I couldn’t fully understand. During my hour in the small basement office a nurse called and interrupted our conversation. It was important I took the call that I had been waiting for all day. Following up on the test results, the nurse scheduled another appointment for something called a PET scan the following Wednesday. These unfamiliar words were the topic for the rest of our time in the comfy office. With help from Google we learned PET stood for Positron Emission Tomography. According to www.healthline.com, “This scan is an imaging test that lets your doctor check for diseases in your body. The scan uses a special dye containing radioactive tracers. Certain organs and tissues absorb the tracer and help your doctor see how well your organs and tissues are working.” What? The repercussions of continued and more elaborate testing had not registered in my brain. For the next week, I couldn’t tell if my lack of breath stemmed from anxiety or the unknown "mass" in my lung. Five days seemed like a long time to find out what was going on inside my body. I didn't have a choice but to wait.

I have a correction, it was Stage 3C lung cancer...

The year began like every other year. Winter in North Dakota. A few nice days providing a taste of spring. A new found love of exercise, memories of my mom and the upcoming birth of a grand daughter. The end of December became the beginning of an unexpected journey. As with most stories it begins with a single step. My mother walked everywhere. Living in a small town about a block from Main Street meant we could walk to work, to school and to the grocery store. The exception, of course, was major shopping requiring a car because the bags were too many to carry. After supper, Mom would walk around the small town of Gackle. In the winter, she walked around the dining room table in the very-large, two-story house we called home. I am sure it drove my dad crazy. She did it for her health and to maintain a reasonable weight. She would joke about her figure, and I heard many times say, “I was born a size 16.” These ladies were all shaped the same — like good German-Russian farm girls, even if they didn't live on the farm. But Mom, and her sisters, always dressed to the nines and looking marvelous. Recently, someone sent me a meme that read, "We used to be young and beautiful; but now we are just beautiful." It is the truth. My brother and I inherited this walking gene and to this day walk as much as possible. I took time out of my work day to walk outdoors and enjoy the sunshine, if only for a short time. My brother walks his dog every day, even in the coldest months. At the tail end of Covid I took a remote job designing a small newspaper from home. Doing ads, writing columns and laying out a paper was great fun. This job offered me the freedom to walk during the day while waiting on copy or proof readers. I took full advantage of it as a stress reliever. Fresh air and walking works to eliminate headaches and gives me time to write. Its too bad my brain doesn’t work like a recorder, I’ve misplaced a few good thoughts over the years by not carrying a notebook with me. When I was close to 40 years old, I started running. I loved running. I ran seven miles, six days a week, and took part in many local road races. On my birthday I would run 10 miles just to say I did it. Of course, one day my knee gave me some trouble — and I gave it up physically, but in my mind I wanted to run again. Thinking about running released dopamines that made me feel good. So, as I neared the time of my life where my days would become my own, I thought to myself, “I should train for a half-marathon.” I had no solid goals, but decided to walk/run every day temperatures rose above 20. Barring the wind, which was so fierce across the empty fields along the gravel road some days I had to turn back. There were days I powered through the wind. As my mother always said to us as rowdy youngsters, "Why don't you go outdoors and let the wind blow the stink off ya." It wasn't a world record, but I could do two miles in 30-35 minutes, but in my age category making 13 miles would be great. And, if I didn't do a marathan, the exercise was important for keeping my cholesterol in check. I looked forward to the time of day when I layered up, tied my running shoes and checked the temperature. Afternoon temps rose to the 20s to mid-30s in the middle of December 2022. When it was sunny, perfect for heading down 34th Street. December's sun was so warm, it turned snowbanks in the ditches to rivulets of much-needed moisture. The sun approached the horizon and changed the clouds from pure winter white to oyster hues of pink and blue. Before I left the house, I walked into the living room and asked JC to walk with me. He said, "not today." So I said, "If I'm not back in an hour, I'm either dead or in jail." For those of you who watch Fargo, you will recognize the quote. I was looking forward to traveling to South Dakota for the birth of my granddaughter. I cleard my calendar so I could stay for a few days. However, I caught a cold from JC and developed a dry cough. The cough hung around, and thinking it was contagious, I decided to visit my doctor to make sure it was not Covid. I didn't want to pass anything along to the new baby. It was Dec. 27, and I hadn’t been to see the doctor since my wellness visit on May 6 that year. The doctor, and I, decided to give it some time. Looking back, after visit notes read, “likely a viral respiratory illness. Reassurance as to no significant concerning signs or symptoms and lungs are clear.” She gave me the go ahead to travel and see the baby. Good news. I felt wonderful. The exercise worked to maintain my summer weight. I looked much better in my clothes and had less headaches. Driving down the road, I thought, “I feel so healthy.” Until I wasn’t.

The year I became my mother This post is the beginning of the year 2023 with roots in 2022. Some of you may have read this post as I planned on using it for my Christmas letter. Be warned, it's rather long. Christmas 2022, I became my mother. It wasn’t planned. I’m not sure it was supposed to happen, but it did. It’s the way of the world. Eventually, one generation replaces the other. It’s begins slowly. You go about your day with confidence forgetting to check the mirror before you leave the house. In my mind I am still 21 and looking foxy. That is until I pass by a large window with the sun behind me, and my reflection stares at me in unbelief. “Who are you?” “I am you.” “No way. You look like my mother. My mother, my aunts — that’s who looks like that, but not me.” "Look again." It is the way. I might be shocked at how old I have become, but I feel blessed to be as healthy and productive as I am. In that respect I am totally my mom. Mom has been gone for about six or seven years now. For some reason, 2022, the year my dad passed away has amplified my missing her. I'm missing both of them. I'm missing the way Christmas used to be. Here are some Kaseman cousins: Dennis, Rickey, Brunella, Douglas, Debbie, Steve, and me. Here comes Christmas. Things have been so very different. I’m not sure if it was the two weeks of winter weather holding things up, you know, mail delivery, packages from UPS and trips to the store with empty shelves, or something else. It was simply different. I wondered why my mom started short-cutting things as she aged. Gifting money instead of stuff at Christmas, not putting up a tree or using frozen dough for dinner rolls at the big meals we enjoyed at their house. My Christmas spirit got up and left. It began with stuff at my church of 30+ years. Then, what do you buy your children when they have jobs that net them more money than I could imagine earning in my lifetime. Sure, I could make them things, but they don’t even need that kind of stuff… stuff everywhere. I’m guilty of that also. It seems to me that the word “anticipation” has left Webster’s in the dust. Today’s youth wait for very few things with anticipation. Since my “retirement” (and I use that word loosely) in April 2022, I have begun a purge. For the past 40 years I have walked over Christmas cards and letters bundled by year in plastic tubs stored in the “root cellar.” These pieces of paper and colored card stock are filled with memories, people I can’t remember, people I love and stay in touch with, and handwriting. Yes, cursive handwriting. Many children can’t read cursive anymore. We, JC and I, actually got into a convo with someone last Saturday about why he thinks cursive is not necessary with technology. I tend to disagree. In the future there will a specialized office with trained staff to decipher cursive handwritten documents found in abandoned basements like mine. As I have been casually going through them, picking out a few items for a “second” review, I found artwork, letters, thank you notes and tons of photos of smiling children or families together for a Christmas photo. It was like my life was passing before my eyes as I watched my friends’ (Karen Benson McMahon) children grow up and have children of their own. I emptied one or two bins before life interrupted the progress. There were boxes of beautiful German glass Christmas ornaments from my days living in the old Kelsch house in downtown Mandan. It was a house meant for Christmas. My tree, always real, reached to the wood-beamed ceiling. There was dated thick red carpet over hardwood floors and a real fireplace. I decorated my tree with vintage ornaments collected at rummage sales in the 80s, strung popcorn, glass blown icicles from someplace like Sundance and loads and loads of love. Don’t get me wrong, I do have still have a tree. It’s from Lavonne’s Hallmark in Mandan, when Mandan had a Hallmark store. It is green, the color of the Grinch and looks like a Charlie Brown tree decorated with beaded spiders. Christmas is not the same. I thought, if I give these treasured Christmas decorations to my daughter, daughter-in-law and sister-in-law I might still enjoy them on their trees instead of in boxes as they have been for the past 15 years. Then there's the multiple Christmas dinners my children have to attend. We celebrate with an early Christmas dinner, and rather than fuss with a turkey and all the trimmings, I served Salisbury steak, green bean casserole, mashed potatoes and Jell-O mold, among other side dishes. It was a nice 50s-style meal. We also had Christmas early to clear our calendar for the biggest event of the year, J.C.’s birthday. He’s not getting any younger. NOT — it was more important we were available for the birth of a granddaughter, Audenia Mae Barnhard, sister to the Fabulous Miss Elle, on Dec. 30., by my daughter, Claire, and her new husband Jason. Now that’s a big event. In April, we were expecting another grandchild, a yet-to-be-named boy, giving Lucy and Oliver a younger brother. He came a little early and was named Finley Hill making seven grandchildren. Of course, that’s nothing compared to the 40-60 grandchildren (my cousins) we would see at Christmas time at my grandparent’s home. WOW. Somehow I thought those days would never end, but they did, and my aunts and uncles are slowing moving to the “kingdom” so they can be together again — no more sorrow, no more tears, no more pain. I told J.C. “We need to have some parties so we can see people outside of all the funerals we had this year — friends and family.” Finally, there’s the Christmas card thing. I used to design a unique and personalized card ever year and write notes (not a long ones) in each one. That didn’t happen, not even close. Rather than order special cards, I thought I would send out the ones that I inherited from my father when we cleaned out his house for the last time (yes, we had about three or four or five go-arounds moving them from their house in Gackle, to Jamestown to the assisted living to nursing home and back again more than once). I decided, "why waste a good card?" That’s my mother talking for sure. Battling the snow and doing farmers markets well into December meant I was busy filling pfeffernusse cookie orders and making fingerless gloves. For some reason, I just can’t quit buying yarn and playing in my studio. I thought without a full-time job, I would be able to design my heart out. NOT. Somehow life gets in the way. Therefore, if you did not receive a card from me, it’s because with the best of intentions. I wanted to take the time to write a note and handwrite an address on the envelope, at the same time, using of all the mismatched cards hiding in my closet, but I never got that far. I don’t know — blame it on the knitting machine, or recovering lampshades or shoveling snow. Or maybe Christmas 2022, I need some transitioning time to my new role as the “elder” of the family. Being my mother means cutting back on dinners, scaled-back gifts to the children (not that my children complained about the sacks of money I distributed to a select few), hopefully fun and useful things to the grandchildren, downsizing and all the things that go with it. Unlike my mother, who liked to stay home even more than myself, I went south the day my granddaughter was born. It’s not easy for me to be away from my house for an extended period of time, but I am getting better. That trip, my friends, is the beginning of the story. This is the longest post I have done in a long time. Rather than working on my Christian Apocalyptic love story, my Kaseman family history book or my other books circling my brain looking to get out of my brain, I had to empty my heart of its unnamed feelings about Christmas 2022. It’s a mixture of grief, loss, gain, family, memories and snow — lots and lots of snow. BUT, as the Grinch's story goes, “He hadn’t stopped Christmas from coming. Somehow it came, it came just the same.” Love to you all my friends and family. I feel better already even if its July and 90-degrees outdoors.

Thank you so much, I am so grateful to have found this group. No one seems to understand that even if I look okay on the outside, that doesn’t mean I don’t think about what’s going on inside my lungs. I am on ‘Empenzi and so far, very little side effects. I will take a look at those links - I already feel more hopeful about my situation.

I was diagnosed with stage 3b lung cancer in late January. I have completed treatment and seem to be responding well to the radiation and chemo. I am doing immunotherapy at the moment and trying to do what I do which is garden, farmers markets, write, take care of grandkids and take line dancing class. After completing treatment I decided it was time to write about my experience at a blog site I started a few years back at www.indychildren.blog. I have researched and written four books on the German Russian food and farms with focus on women. I do not have much of a support group in particular relating to lung cancer. It’s all breast cancer so I decided I could use a few friends.