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  1. 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.
  2. 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.
  3. 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.
  4. 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.
  5. Hi, My english isn't perfect. Im 45 y old and i am a smoker for +18 a 20y. 1 week ago i started to have a hoarseness voice and 3 days after that start i feel soms chest pain. In february i got 4 months diarrhea, the family doctor did a stool test and the stool test was ok. after 4 motnhs my stool test was ok. Sometimes i got chest pain (i read on several sites the chest pain of lung cancer must be worse when you laugh, cough,.. ) and when i laugh or cough.. my chest pain stays the same.. not worser.. and 1 week i feel it... then i feel nothing for serveral weeks.. Now i got a hoarseness voice.. 1 week now. i think today my hoarseness is going better.. I went tuesday 18 juli to the family doctor and i did a blood test (it was normal) and she saw my throat was a little bit red. She said my throat is slightly inflamed and the hoarseness is from the inflamation. She also said its viral and that i can't take any medicine for this.. I talk if it should be lung cancer be because when i search on the internet i read the badest things... as lung cancer .. But i'm afraid that the chest pain that i feel sometimes and my hoarseness voice is a symtom of lung cancer. -If you got lung cancer (early?), is the blood test normal? -if you got a hoarseness voice from lung cancer, is the throat slighty inflamed (i feel a little bit a sore throat) or you got only a hoarseness voice without an inflamed throat) -about the chest pain.. now i don't feel it.. but sometimes i feel a little chest pain.. which i feel 80% of the time.. after a few days he is gone. I think if its lung cancer i should feel it all the time, for weeks... of longer an and should be worser when i laugh or try to cough. What do you think? Thanks for your help/advice
  6. Hello, I'm 24 years old and moved out of home last year, but flying back in a few days after my mom received the diagnosis a few days ago. She has been having a specific back pain since last October, and some rib pain she thought was indigestion. She was taking aspirin and Tylenol for the pain much too long, and was originally getting scans for related issues. She got a CT scan finally recently, and found out while at work Friday that it's lung cancer. It's in her left lung upper lobe, t3 and t4 vertebrae, and one of her ribs. Apparently the rib is not looking good and will probably need removed. She's seeing a specialist on Monday (tomorrow), to figure out where to go from here I guess. I've been researching like crazy, I couldn't get a decent flight until Wednesday so I'll just be panicking until then I guess. I'm here to find out what to do, where to go, what to tell her, etc. I'm completely lost. I know she's lost too. She lives alone, we have family in the area but they have families of their own, so I'm fully expecting to fly back and help her wherever I possibly can, and don't care if I ever come back to where I moved. I am fortunate enough to work remotely so there is no worries there. She works for a hospital system outside Pittsburgh, PA, and has for most of her life as a transcriptionist and a front-desk assistant, and was due to retire in a few years. She's definitely not heading back to work now ever again though, she told me she's taking the week off since she has so much saved up PTO to figure things out. So I guess she will use all of her PTO, or however that works, and do some kind of medical leave so she can have insurance to handle the storm that just arrived. Since we live within an hour from Pittsburgh, I've been researching anyone in the area to help us with getting some sort of biopsy to figure out exactly what mutated. To my understanding, there are targeted drug therapies available for specific mutations, as well as new-ish immunotherapies such as TCR Gene Therapy. I also found some hope here. I'm assuming a combo of surgery, chemotherapy, followed by immunotherapy is in the near future. I'm trying to create a plan, and so far I have the following: Get back home as soon as I can and help her with absolutely anything she needs (she's in good shape, not overweight, but has smoked 1/2 cigarettes a day most of her life) Find out what she can take right now for reducing the back and rib pain so she can sleep properly at night (looking into CBD edibles or THC, doesn't matter, just anything that will help the pain that's not Aspirin or similar). Get to the specialist on Monday and devise a plan with them Get a biopsy scheduled to figure out exactly what kind of gene mutation she has as soon as possible to devise a treatment plan I want to note, I'm a software engineer so I (think) I am capable of understanding complex treatments and the situation here, and am familiar with advancements in using artificial intelligence to personalize lung cancer treatment, so feel free to dump absolutely any help on me regardless of how complicated. If anyone has any knowledge of places in the Pittsburgh area, or anywhere in the world really, that use these newer methods using AI of finding treatment / targeted drug therapies / immunotherapies, or anywhere that uses T-cell gene therapy, please let me know. I am a firm believer in data, and prefer to work with any treatments or clinical trials that focus on such. To whoever reads this, thank you so much for taking the time. I'm terrified and so is she / our whole family. Our dog recently passed away in January, who was my sisters who passed away in 2012. My mom has been through more than any human should go through, so I just want to spend as much time as I can with her and help make this time worth living through. Thank you, Jacob
  7. MY STEPS TO SURVIVING A LUNG CANCER DIAGNOSIS Step 1 – Invest in sophisticated diagnosics before diagnosis If you smoke, were a long-term smoker, or are in an occupation that exposes you to carcinogenic toxins (asbestos removal, auto mechanic, painter, etc.), I suggest getting a computed tomography (CT) scan, often called a CAT scan, of the chest once a year. Insurance now covers it and CT will detect tumors far earlier than a chest x-ray. Early detection of small tumors dramatically enhances your survival chances. I had a chest x-ray in January 2004 and was diagnosed with stage 3b, non-small cell lung cancer the following month. The tumor hadn’t shown on the x-ray; but at diagnosis, it was almost 3 inches long and ½ inch in diameter. The only symptom I had was coughing up blood the day before diagnosis. Learn more about early CT screening. Step 2 – Choose a good general practitioner Your general practitioner may be the manager of your lung cancer treatment. The GP likely will pick your cancer team and may need to do a little arm-twisting to get things moving. Therefore, there can be great benefits to having a GP who is seasoned and well known in the medical community. I prefer doctors of osteopathic medicine to medical doctors. I’ve found that in my experience the former treat people, not patients. I believe a good physician shows kindness, consideration, and compassion toward those in his or her care. These characteristics are essential. Be sure you know your GP and your GP knows you. Such knowledge and trust will give you a survival edge. There are great health care professionals out there. Step 3 – Ensure your oncologist is a physician A doctor has a degree in medicine and a license to practice. A physician is devoted to restoring, maintaining, and promoting your good health. My physician oncologist does a complete examination (looks in eyes, nose, and throat, checks pulse in the extremities, checks reflexes, listens to breathing and heart rate) every visit. He reviews and explains all test results and asks how I feel. He looks at me as I speak, and he listens and makes notes on what I say. He carefully explains medical treatment alternatives that may arrest the disease, and together we choose each next step. He never rushes consultations and, consequently, often is late to scheduled appointments. Because his tardiness results from spending time with those he treats, I know he cares about me and every other patient. These are some characteristics your physician oncologist should possess. Step 4 – Learn about your disease At diagnosis, I had no idea what lung cancer was. Moreover, I didn’t know what an oncologist did, nor could I spell the word! After diagnosis, I read everything I could find about the disease; a good resource is the www.LUNGevity.org website. Then I read medical journals, government reports, research papers, and studies. I made notes about things I didn’t understand and asked questions at my oncology consultations. My wife attended every consultation, procedure, and test to ensure every question was asked and answered, and that we understood the answers. You need to know about type, stage, statistics, radiation, diagnostics, chemotherapy, side effects, surgical options, and so much more. Your chances of survival are improved if you are informed enough to ask highly perceptive questions. Step 5 – Acquire a sanguine attitude quickly Cancer is a disease of death; lung cancer kills more than all other cancers. Your attitude toward treatment is, I believe, essential to survival. When you acquire a sanguine attitude, your treatment team will notice your optimism. They will enjoy interacting with you; they will care about you. I strongly suggest you read Stephen Jay Gould’s essay “The Median Isn’t the Message” to help you understand survival statistics and find optimism about what appear to be bleak probability of survival projections. Join a cancer blog or messageboard. I am a member of several where I can broadcast my complaints and protestations to people who understand and have useful advice for coping. Find cancer support groups and join one. Most people who treat you have no idea how you are feeling. But survivors in cancer support groups understand; they know how you feel—you’ll fit right in! Step 6 – Any port in a storm There is no such thing as “a little stick!” During procedures and treatment, almost everyone will attempt to gain access to your veins with an intravenous device of some type. All such intrusions are uncomfortable, and unless the practitioner is good and lucky he or she will miss more often than not. If your treatment involves intravenously administered chemotherapy, you likely will get stuck at least once a week. A good way to avoid discomfort and frustration is to ask for a port. Installation involves simple, low-risk surgery. Once in place, you need to keep the area clean and exercise precautions when bathing—but access to your veins is no longer a storm but a port in a storm! Step 7 – Don’t believe the miracle cure The consequences of a lung cancer diagnosis are frightening. For most, it will be your first serious encounter with the prospect of death. When you type “lung cancer” into Google, you will be bombarded by advertisement that promises miracle cure at considerable expense. There is no such thing as a miracle cure! Before you invest time (now precious) investigating one of these “too good to be true” remedies, check it out on www.quackwatch.org and discuss it with your physician. Oncology is a medical science. Procedures, drugs, and protocols are tested using scientific methods that are published and reviewed by peers and regulating organizations. When science-based breakthroughs are discovered, they are broadcast very quickly throughout the practitioner community.Read about Steve Jobs—one of the smartest technologists and businessmen the world has ever known—who delayed his cancer treatment. Step 8 – Don’t try to tough it out I am a retired soldier and believed I was man enough to handle almost anything. Cancer proved to be the “anything” I could not handle! I suffered a long time trying to tough it out before I admitted I was depressed. My physician’s response: “Of course you are depressed—how could you not be?” He prescribed appropriate medication, arranged consultations with a psychologist, and suggested I attend support groups. Unless you are tougher than I, you will experience depression. Admit it and accept help. Here are some other things you might try. Ask for the “freeze spray” before an IV is used. If claustrophobic, get a script for Xanax and take it shortly before scans. Even in summer, wear warm clothing to diagnostic and infusion sessions. Some areas where these take place are kept very cold. Many treatment centers have volunteers—engage one in conversation. Many are survivors or caregivers and have a wealth of helpful information. During consultations, I was so frightened I couldn’t rationally ask questions about results or next steps, and I certainly couldn’t remember what was said. Consequently, I never go alone to a consultation. I suggest if you can, always have someone with you too. Step 9 – Become a calendar maniac If you have a smartphone with a calendar application, become an expert in its use. If not, keep a paper “cancer calendar” to record information. Your life after diagnosis will likely become filled with scheduled appointments, and given the nature of the disease and intensity of the battle, these are appointments you don’t want to miss. For example, my chemotherapy cycle required an infusion every third Friday. I had to record three rounds of steroid medication taken every six hours before each infusion. I had a scheduled blood test every Monday following infusion. Nausea started Sunday morning and lasted until Tuesday. Joint pain started Wednesday and lasted until Saturday. If I took the nausea medication about an hour before onset, symptoms often were minimal. Furthermore, if I started pain medication a couple of hours before onset, my pain was manageable. I used the alarm feature on my phone to warn me in advance. Plus, there was life to live, and the calendar helped me avoid conflicts between my cancer treatment schedule and my life events schedule. Step 10 – Choose to live When asked about my cancer experience, I often tell those in treatment that cancer is a disease of life or death. I believe if you choose treatment, you are choosing life. And if you choose to live, do something with the life you are given. The “something” will be different for each of us, but doing whatever you enjoy or find fulfilling is so important. If you enjoyed an activity before diagnosis, do it afterward. Look at yourself in the mirror every morning. If you don’t see an expiration date stamped on your forehead, then enjoy the day and look forward to the next! Oh, by the way, your hair will grow back! Baldness is a beautiful badge of courage. Stay the course.
  8. After a Lung Cancer diagnosis, it is normal and expected for even habitually calm people to worry about their futures. But what happens when those worries begin to “take over”, interfering with your ability to enjoy your life? Most of us are familiar with the quote by Barbara Cameron, “Worry about tomorrow steals the joy from today”. However, as cancer patients, our relationships with worry are usually more complicated than that. Worry, like any uncomfortable feeling, is often a signal that you have a need that has not been met. So, when you have a thought connected to a specific worry, try to dig under the surface of that thought. For example, “I’m worried that my scan will show progression” or “I’m worried that I won’t survive” are thoughts that, on the surface, we can’t do anything about. They are reasonable to have, but “joy stealers”, so to speak. Well, what if the unmet need behind those worries is “I need my fear validated”, “I need to be heard” or even “I need a hug”? Worries can also be motivating and empowering. For instance, worry about your children’s future might drive you to assign a legal guardian, should something happen to you. Worry about the lack of funding for Lung Cancer might spur you to be an advocate. The next time you have a worry related to your diagnosis, don’t dismiss it! Instead lean into it, feel it, and ask yourself the following questions – “Is my worry revealing an unmet need, and how do I get it met?” “Is my worry pointing me toward an empowering action?” All of this said, a Lung Cancer diagnosis can be so frightening, and personal circumstances so complicated, that sometimes worry is just too hard to manage. Options like therapy and medication can provide critical relief. After all, joy is a reasonable goal – and with the right support, it is within reach. Lisa Zarov, MSW, LCSW __________________________________________________ LUNGevity understands that a lung cancer diagnosis can be overwhelming. To answer your questions, the Lung Cancer HELPLine offers toll-free, personalized support for patients and caregivers at any time along your lung cancer journey. Our oncology social workers are available to help you manage your emotional, financial, and support challenges. Dial 844-360-5864, Monday through Thursday, 10:00 am to 6:00 pm, and Friday, 10:00 am to 5:00 pm (Eastern time). Call as often as you need—LUNGevity is here for you with tools to help you navigate your lung cancer diagnosis.
  9. The nature of the World Wide Web is the essence of its creators. We’ve made a conduit of ideas and information that chronicles every facet of human behavior and lots of non-human behavior. One can find a searchable version of the bible and then click to something that would be an embarrassing find in the bible. The Internet is encyclopedia, newspaper, entertainment, and abstraction all available with only one precondition, access. I was diagnosed with late-stage lung cancer in 2004. The Internet existed but people-to-people interactions were limited to mostly email. Nevertheless, the Internet allowed access to all kinds of information about lung cancer—some of it scholarly and some of it junk. As I recall, there was nothing resembling today’s cancer message boards where people could communicate, consult, and commiserate with one another. Today, there are many and I’ll reveal how one helped me recover from depression and find hope. In March 2006, I was in active third line treatment, infused Taxol and Carboplatin hardened by the oral chemotherapy drug Tarceva. After three failed surgeries and twelve failed chemotherapy cycles. My lung cancer was persistent and I was depressed. Watching TV on a Sunday afternoon in the throes of side effects, I saw a CNN broadcast interview with Phillip Berman, M.D. Phil was a radiologist, never smoker, and lung cancer patient who ironically was diagnosed about the same time as me. He started a cancer blog to keep friends and family informed about his treatment. It morphed into RedToeNail.org. I joined, thus starting my therapy online. Why does it work for me? First is recognition that I’m not alone. Cancer treatment is a slog through appointments and side effects. It is beneficial to be reminded that others are trudging that same ground. Next, these people understand my disease, its treatments and mistreatments. Moreover, they have useful tips and tricks that work! I recall to this day the suggestion I eat a steamed bowl of plain rice each morning before taking Tarceva. It laughed at Imodium, but respected the rice. Last, it is a channel for me to express my thoughts, ideas and uncertainties with people who completely understand. To say they’ve been there and done that is a vast understatement. They designed the tee shirt the experts purchased! Today’s Internet has many opportunities to connect survivors and caregivers. There is the ubiquitous thumbs-up symbol, short sentence reply, and emoji of popular social media platforms. This is fast-paced therapy connecting hundreds, perhaps thousands quickly. It is useful, but I prefer message boards. I like to take the time to read, reflect, and recall my experience when someone reaches out for help. Both, however, are effective. It is interesting to explore why. I’ve attended hundreds of cancer support groups. They are beneficial, but I well recall my first several sessions. Certainly I was made welcome, but the fear I had of my disease was bested only by the fear I felt talking about it. I’m a relaxed public speaker but not a public cancer speaker. As I grew comfortable with a group, I realized another downside. Regulars stopped showing up. The very nature of lung cancer makes support groups a population in decline. Moreover, treatment side effects always seemed to coincide with the support group meeting. People in treatment didn’t feel well enough to attend. I’ve also been an individual support resource both in person and telephonically. First meetings are a bit awkward but these can be very effective for both survivors. There is a shared experience and in every case, this led to a meaningful relationship. There is that same downside of the support group; lung cancer claims a life and now it is a life I was personally and emotionally connected to. It takes a very special constitution to provide survivor-to-survivor support and mine doesn’t measure up. So I work the message boards, mostly at the LUNGevity Forum but some others. I am relatively new to the LUNGevity Forum and it is fascinating to read the history of the survivors, year after year. Some move on to other activities but return after a long absence to a rousing welcome. Why? For exactly the same reason online support resources are so effective. We celebrate life. Stop by and say hello. Stay the course.
  10. Lisa Haines

    Covid and me

    This is story I did with LUNGevity - I was very honored to be given the opportunity to share my how Covid has changed my life, especially as a Lung Cancer patient. I'm sure most of you can relate. COVID and Me By Lisa Haines When I was diagnosed with Stage IV lung cancer in 2015, I was extremely sick and my prognosis was pretty grim. I decided then, with the time I had left, I was going to live each and every day to the fullest. I wanted to do all the things that my husband and I had always talked about doing when we retired, such as travel and spend more time with family and friends, while I was still healthy enough to do so. Luckily, I responded well to treatment and have since been stable and doing well. I have been able to do a lot of the things I decided I would do and crossed many things off my bucket list. In fact, I had planned to celebrate my 5-year Cancerversary in Vegas with family and friends in March 2020. Unfortunately, that’s when the COVID-19 pandemic began. The pandemic has really inhibited my mentality to “live each and every day to the fullest” and taken away my ability to do my bucket list items. I imagine this change in mentality is something that many people with late stage cancer are facing right now. As cancer survivors, we are an incredibly vulnerable population. It’s important for people to realize how significant the risks for lung cancer patients are. Many pre-existing diseases are risky, but many of us with lung cancer have damage to our lungs already or have had a surgery and only have one lung, making the risk of serious illness worse for us. A lot of people don’t seem to understand this. Worse, some people seem to think that because we are so vulnerable, we should just stay home until the vaccine is available. What they don’t understand is that we already have our life expectancy cut shorter than we ever expected. It feels like COVID is stealing more precious time from me in so many ways. It’s a near-impossible catch-22 that this virus has put us in: try to protect your health but also live at the same time. That’s why this pandemic has been really difficult for me. The hardest part is what the virus doesn’t allow you to do. Prior to March 2020, I spent about 20-30 hours a week babysitting my grandkids, who live close by. I would see my 86-year-old mother, who also lives nearby, often. I would visit my son, who lives out West, several times a year. Once the virus hit, I stopped doing all of these things. I felt trapped in my house. As time went on, it was harder and harder to stay isolated. I would do video calls with my family, but it would just make me feel worse because it wasn’t the same. It became a quality of life issue for me. I am looking at my life in a shorter span to some degree, yet someone was telling me that I can’t see the people I cherish in the time I have left. Another added stress for me is that my husband is an essential worker and was still required to go into work each day. We of course took added precautious to ensure he wasn’t bringing home the virus, but there’s no way to be certain; there are just so many unknowns. I’m not sure what I would have done if he did get the virus. It’s really difficult to be in the same house and not touch things. All you can do is hope for the best and frequently hand wash. For me, managing the virus precautions while living with lung cancer ultimately became balancing living life and staying alive. I decided to talk to my doctor about the possibility of seeing my family again. He asked me many questions and ultimately, based on my responses, he was able to understand my need to be with them and gave me his blessing to do what I felt was safe for me. He explained that when COVID starts to affect our quality of life, it is important for lung cancer patients to make choices that they feel are best for them. I am lucky to be stable, off treatment, and not currently immunocompromised, so I decided it as best for me to see my family again. It was my choice to decide what I wanted; I made the choice to live my life. At first, I only saw my family outside and with masks. However, the day my youngest granddaughter cried because she didn’t recognize me, my heart broke. A week or two later, I started to go inside their home. I used extra sanitizer and washed my hands constantly. As I began to feel safer and the COVID case counts in our area went down, I resumed my normal life with them and go to their house on a regular basis. I consider it my second home. We do our best to take precautions, but I know I’m taking a risk. However, for me, quality of life wins out over COVID. I think the best advice I can give for someone struggling is to try to keep as busy as possible. I have used the extra time to keep more involved with advocacy for lung cancer. I even became a LifeLine mentor. I have also been joining the Virtual Meetups; they offer great support and are super helpful for people who might not have family nearby and feel isolation. While things have improved since the spring, I am starting to worry about winter. Right now, we spend as much time outside as we can. I’m not sure what we’ll do when it gets colder and that’s no longer possible. I will very likely need to isolate again this winter and that’s scary and sad. Currently, I have 5 airline tickets that are waiting for me to use. Every day I stay Stable I am hopeful that the time will come for me to be able to use them again. I hope for a safe and effective treatment for Covid, so that it’s safe for us all to get back out again. I look forward to the day that Covid is a bad and distant memory for all. It's not only stealing time, but as also taken far too many precious lives - such a devastating virus in so many ways. About me: Lisa Haines is a Stage IV lung cancer survivor who lives in Northeastern Massachusetts with her husband and two Rescue Chiweenie Dogs. She is Mom to two amazing adult sons, one living locally in MA and one living in CA. She’s been blessed with two sweet granddaughters, Harper now 3 ½ and Hazel who turned 1 this summer. Her grandchildren came into her life after her diagnosis and truly were a dream come true. At the time of her diagnosis, she did not have any grandchildren, but being a “Nanni” was something she dreamed of for many years and they have added even more joy and love to her life. They are now another huge inspiration in her cancer journey. She plans to be here for many years to watch them both grow up. Other than spending time with her granddaughters, family and friends, she also enjoy travel and can’t wait to be able to get back out to San Diego to see her son. She enjoys supporting other lung cancer patients and is very active with LUNGevity. She is also a moderator for two other Lung Cancer Support Groups on FB. Advocacy has become especially important to her and it’s something she wants to pursue long term.
  11. I am not a statistics wizard; an engineer, I value the predictive power of statistics. Indeed, if one can precisely control variables, a statistics-based prediction of the future is remarkably accurate. The joy of predicting end strength for a new carbon-nanotube concrete mix design melts the heart of this engineer. But, concrete is a thing with but 4 variables to control. Human beings have perhaps millions of variables, thus predictions about people are vastly more complicated and inaccurate. Statistically-based predictive power has a foreboding downside. The methodology is used by the medical profession to forecast life after diagnosis with late-stage lung cancer. Unfortunately, I have first-hand experience once predicted with but 6 months of remaining life nearly 13 years ago! My doom was forecasted with high statistical confidence and for a while, I believed it. In the dwell time between treatments, I searched for methods used to generate my projection of demise. Each patient’s type, stage, age, ethnicity, race, and date of diagnosis are reported to the National Cancer Institute on diagnosis. Deaths are also reported but not the cause of death. Nothing is captured on complicating health problems like cardio-pulmonary disease, diabetes, or other life-threatening maladies. The predictive data set appeared slim and uncontrolled. My doom and resulting gloom waned while mindlessly searching web pages for statistical good news. Ammunition in the form of a powerful essay by the noted Harvard biologist Stephen Jay Gould – “The Median Isn’t The Message” – contained: “…leads us to view statistical measures of central tendency [median or mean] wrongly, indeed opposite to the appropriate interpretation in our actual world of variation, shadings, and continua.” This meant the statistician seeks to combine data and express it as a median or mean to predict or explain. I’d forgotten that I was one inaccurate variable in a “world of variation.” One data point used to calculate a central tendency of survival for about 1.4 million Americans diagnosed in 2004. I might be the one holding the right-shifted curve from intersection with the axis of doom. Gould survived 20-years beyond his late-stage, nearly always fatal, abdominal mesothelioma cancer diagnosis. Ironically, he passed after contracting another form of unrelated cancer. A distinguished scientist, Gould eloquently described the limits of science and statistics by suggesting that “a sanguine personality” might be the best prescription for success against cancer. There is always hope, with high confidence. Listen to his essay here. Stay the course. ____________ Get your copy of Scanziety here https://www.amazon.com/Scanziety-Retrospection-Lung-Cancer-Survivor-ebook/dp/B01JMTX0LU
  12. Early on, we learn Algebraic equations with only one solution. Then we encounter equations with two solutions -- Quadratic Equations. Consider: x2 + 3x – 4 = 0. This has two solutions: x = -4 or x = 1. Both are correct; one is negative and one is positive. Algebra students get very comfortable with solutions having a positive and negative outcome -- lung cancer survivors are less comfortable! The positive outcome for lung cancer is extended life. But like quadratic equations, there can be negative outcomes that are less desirable. Mine is chronic pain. So to the question, how does one fit a negative outcome into the positive? No, Algebra does not help. But, for those in treatment or surviving after treatment, preparing for life with negative outcomes is helpful. My chronic pain has two primary and many secondary causes. I have peripheral neuropathy -- numbness in fingers and toes including a burning sensation in toes and pain in the foot joints. It is a common Taxol side effect, and we informally call it “taxol toes.” Also, I have nerve damage caused by quite a few surgeries to my right chest that is chronically painful. How do I fit these negative outcomes into life? My strategy is to tolerate chronic pain until bedtime. Then something must be done or I won’t sleep. I’ve cycled through over-the-counter, then prescribed sleep medications. Both worked for a while. Doc found a study suggesting a therapeutic effect for Xanax on chronic pain. He prescribed a 0.5mg dose at bedtime, allowing an increase to a total of 1.5mg. This relaxes me and makes me drowsy. It works about 6-in-10 nights. A secondary cause sometimes drives pain above chronic levels. These are: chemotherapy induced joint pain; muscle cramps; stress, anger and excitement; sneezing and coughing; and flying on aircraft. The joint pain, an in-treatment side effect, required narcotic medication in every case to relieve. Reliance on narcotics has two downsides: an inability to think and function normally the next day and constipation. However, other secondary causes occasionally require narcotic medication to achieve relief. Because of the downside to narcotics, we’ve developed a couple of unique pain abatement procedures that may be of interest. Our first strategy is to apply prescribed lidocaine transdermal patches to incision scars and or feet in combination with Xanax. Since lidocaine dosage is limited to 2 patches, my wife cuts them into strips and fits them along my incision scars, and applies them to my feet. A pair of tight fitting socks are stretched over my feet to keep them in place. When the offending pain spike is either in my chest or feet, a full 2-patch application is used. The patches are applied in time to allow the Xanax to work and I sleep, hopefully. The next works only for feet and is a back-up strategy if lidocaine fails. My wife uses an ace bandage to wrap reusable frozen Blue Ice packs to the bottom of each foot. The cold is very uncomfortable for a couple of minutes, but in a short time my feet are numb and if I’m lucky, I sleep. Muscle cramping is a long term side effect from chemotherapy. It stems from low Magnesium blood levels. I take at least 500 mg of Magnesium supplement per day. My oncologist would rather I take 1000 mg, but I suffer digestive system revolt. I learned that almonds provide 75 mg of Magnesium per ounce so I snack in lieu of a second pill. Regardless, I still experience one to two cramping events per day. When they occur anywhere near my feet or chest, chronic pain soars. There is however, no remedy for cramps. The worst occur in the middle of the night and wake me up. Archimedes, the ancient Greek hydrologist, provided an explanation for why immersing up to my neck in a swimming pool eases incision pain. The upward buoyant force of the water offsets the gravitational pull on chest incisions thus minimizing pain. Almost every day our community pool is open, I spend hours in the water. This does not eliminate pain but reduces it noticeably. On leaving the pool, the normal level returns but it is very therapeutic. Lying in a bathroom tub, unfortunately, does not work because there is not enough water for complete submersion. A hot tub works fine, but there is no difference in pain relief from water temperature. Flying in a commercial airliner also spurs chronic incision pain. Most airlines pressurize their cabin between 6,000 and 8,000 feet pressure altitude. This lower-than-sea-level pressure expands my chest cavity increasing incision pain. All commercial flights hurt but long flights are very painful often requiring a dose of narcotic medication in flight. Not flying is the only remedy. Those having thoracic surgery have long complained of incision pain after commercial air flights and cabin pressure is the cause. Another secondary cause is extensive coughing and sneezing. Sneezing is particularly bad when it is a “surprise sneeze”. During the worst pollen events, I stay indoors and I try and avoid school age children to keep the chest colds in check, especially when school is in session. The last secondary cause I have the most control over: stress, anger and excitement. Admittedly, excitement is the easiest to control except when the Dallas Cowboys are playing my beloved Philadelphia Eagles. These two games a year are indeed stressful and since I live among cowboys, someone is going to be angry over the outcome. My wife reminds me when I complain too much that I am lucky to be alive. What’s a little pain given the alternative. She’s right. Doc reminds me to avoid scheduling things in the morning so I can sleep-in late if pain interferes. He’s right. Football season is right around the corner and it is a good thing games are scheduled in the afternoon and evening. Now if the Eagles start winning, everything will be fine! Stay the course.
  13. My lung cancer diagnosis came as quite a shock to my family, my doctors, and me as I’ve always maintained a healthy lifestyle. I exercised regularly, ate healthily, never smoked, and enjoyed a variety of outdoor sports and other activities with my husband and our three children. I worked as a learning specialist for children ages K-8 and loved my job. Everyone I was close to commented that I was “the healthiest person they know.” But in March 2011, after worsening back pain, I visited my physiatrist who ordered an MRI. I figured I had a disc issue with my back or created an injury from too much sitting during work. When I saw my doctor for the results, she was speechless; she told me my upper body was "riddled with lesions." I said there must be some mistake, that the scan was someone else’s. As the doctor insisted there was no mix-up and this was truly me, I felt as if the floor had given way under me, a feeling that never seemed to fade from my day-to-day experience. I was 54 years old. A few days later, I was diagnosed with Stage 4 non-small cell lung cancer. Since I was an otherwise healthy, active, never-smoker, the doctors at Memorial Sloan Kettering Cancer Center predicted I would have the EGFR mutation, and the biopsy results proved they were right. The targeted therapy, Tarceva, shrunk my tumors, and with tolerable side effects, allowed me to continue leading a relatively normal life. I even took up sculling, a sport that I had always aspired to learn. However, I was disappointed when only after 9 months my cancer figured out a “way around” the Tarceva, which is expected for targeted therapies (referred to as acquired resistance). Thus, began my participation in a series of clinical trials and chemotherapy, all with mixed results and, at times, difficult side effects, which forced me to retire from my work which I truly loved and still miss a lot. One bright period during these trials was a 14-month durable response from a trial combining Tarceva and the immunotherapy drug called Nivolumab, also known as Opdivo. Unfortunately, after 14 months I had to be quickly removed from this trial due to adrenal failure and colitis. In addition, I have been taking blood thinners since the diagnosis because of a DVT that was found at that time, and a couple of years ago I had a brain tumor surgically removed. My latest battle is with Leptomeningeal Disease, against which I hope to beat the odds once again. Throughout my treatment, I’ve taken advantage of different integrative health services to help manage symptoms and side effects, such as acupuncture, counseling, support groups, and meditation. I can’t say these endeavors were always helpful, but it was important for me to try to find alternate ways to manage symptoms, both physical and emotional. However, over time my stamina began to wane, and my sense of self efficacy began to diminish. It became increasingly frustrating not to be able to do the things I always enjoyed. The treatments and their side effects can wear you down. Initially, I struggled to find camaraderie with other survivors who have the same mutation as mine. Social media has been particularly helpful, especially in the beginning when I was trying to learn about different treatments and find a community. LUNGevity, Cancer Grace, and Inspire, and Lung Care Alliance were all useful sources of information and support. My husband has been a great support and care giver. Initially, he dug into the research to learn what treatments were in development, so we knew what was in the pipeline. Moreover, my children have also been there for me. Even though they’ve grown up and don’t live at home anymore, they still come to visit me as often as they can. It has been difficult for me to accept not being able to participate in their activities and lives the way I was able to when I was healthy. It has been a continuing effort for me to feel “a part of the game.” If I could share my experience with someone newly diagnosed, I would recommend getting as much information as you can from credible sources and not being afraid to get second opinions. It’s best to be treated at a major cancer center even if it means traveling because the research experience, depth of knowledge, and specialists they provide are cutting-edge. I would also recommend participating in clinical trials if they’re an option, as well as trying to find people to connect with who are going through similar situations. Since my diagnosis, life has been a roller-coaster ride of living with uncertainty and trying to function amidst toxic side effects. I try to appreciate the good days and keep active. This spring will be my seventh-year anniversary living with Stage IV lung cancer. I am grateful for those who are raising awareness of lung cancer as a growing epidemic in non-smoking women and am excited to share my story to help other patients. I am especially interested in helping to erase the stigma that lung cancer is only a smoker’s disease, and hopefully increase research funding to the level it should be.
  14. For the past 11 years, I’ve helped treat lung cancer patients as an RN in a cardiothoracic practice. Then last October, I developed a bad cough that lasted over a month. It was cold season, and my co-workers and I thought it might be pneumonia or even bronchitis. No one suspected it could be lung cancer, since I’m a nonsmoker and haven’t been exposed to common risk factors like asbestos, radon, or pollution. I had a chest ray taken, which showed fluid around my right lung. The tests of the fluid didn’t uncover anything extraordinary. I didn’t look sick, but I felt fatigued and at times, I had difficulty breathing. A few days later, I had a CT scan, which supported the pneumonia diagnosis, but it also showed a thickening on my chest wall. The doctors drained the fluid and tested it twice. Both times, the results came back negative for cancer cells. This didn’t completely rule out the possibility, but it gave us reasons to be hopeful. I started taking antibiotics and steroids, which were prescribed by a pulmonologist. But the second CT scan did not show any improvement. My first surgery was scheduled for late January. The doctors thought I had an infection and that they’d be able to clean it out. But during surgery, they discovered growths in my lung that had expanded into my chest wall. The hospital lab confirmed that it was lung cancer. My boss, cardiothoracic surgeon Carmine Frumiento, and my colleague, Danielle George, a longtime friend and physician assistant who I work with every day, had to give me, my husband, and my family the heartbreaking news that I have advanced lung cancer. It sounded so surreal that at first, I thought I was dreaming. I have a 6-year old daughter and a 2-year old son. All of the sudden, I went from being a care provider to being a patient. I had the surgery, and then later that week, I traveled to Massachusetts General Hospital to meet with some of the best specialists in the country. Danielle traveled to Boston with me and my husband, Chris. Before we left, Danielle and Dr. Frumiento helped us prepare a list of questions to ask the doctors at Mass. General. The doctors at MGH recommended starting a new targeted therapy without chemo or radiation. The results have been very promising on patients with my genetic mutation. But since the medication is so new, my insurance would not pay for it unless I tried an older treatment first. In order for her insurance to approve the new treatment, I would have to progress on the old treatment, or suffer from intolerable side effects. It felt like I was on an emotional roller-coaster. Fortunately, my colleagues helped me appeal the insurance company’s decision, and we won. I still work as a nurse, but I’ve cut down to just mornings, since I get very tired by the afternoon. I’m very grateful for the support of my work friends, who have become like extended family. They’ve helped to make sure I’m getting the best care. I realize that not all patients have those strong connections, and how important it is to advocate for yourself. I’ve been fortunate to have incredible support from my family, friends, and community. They’ve helped with everything from meals to child care to raising funds to help pay for my medical expenses. And my family was selected as the beneficiary of the Celebration of Courage Co-ed Hockey Tournament earlier this month. My husband has played in the tournament for many years to help support and raise funds for families affected by cancer. Now, our family is affected by cancer. It is likely that my cancer will never go away, but I have been told that the genetic mutation cannot be passed down to my children. The goal is to turn my cancer into a manageable chronic disease that I can live with until better treatments are available. I hope my story will raise awareness that lung cancer can happen to anyone, even young nonsmokers. It’s a fact I never fully realized myself, until I was diagnosed. There is so much blame and stigma surrounding lung cancer. I want to help raise awareness about the resources that are available for anyone who is diagnosed.
  15. “I’m sorry, sweetheart these are tumors in your lungs and a form of lung cancer”. These were the words spoken to a vibrant, healthy 36-year-old female on October 19, 2017, by the thoracic surgeon. I knew that things were probably not good when he came in and asked if I was alone. Unfortunately, I was alone. Looking back, that day seems like a blur. I remember the ladies at the checkout desk asking how I was doing as they ask so many patients all day long. It’s mere customer service, right? I never made eye contact and mustered enough energy to say the word “fine”. I was far from fine, but I just wanted to get out of there. I never cried in the doctor’s office that day, but walking down that winding hallway and through the parking lot felt like I was carrying cinder blocks for shoes around my feet. The minute I got in my car and closed the door was the moment that I completely lost myself. I have cancer. I am going to die. My parents are going to have to bury their only child. My world felt like it had crashed. The days and weeks ahead were just amazing considering my new circumstances. People loved on me like I had never been loved on before. I received cards and texts and all sorts of support, but a part of me wanted to tell them that I was still the same person and I appreciated the cards of support, but that I wasn’t dead yet. Please hold the flowers too. My lung cancer diagnosis was a complete shock as it is to so many. However, I was asymptomatic and cancer was the last thing on my brain. I was hospitalized for a Bartholin Cyst. I had my yearly exam already scheduled with my OB/GYN and this exam was far from routine. I explained to the nurse that I was in pain and was running temperatures between 101-103⁰. I visited the local emergency room twice to attempt to acquire some relief and was incorrectly diagnosed. My OB/GYN admitted me to get antibiotics started quickly and mentioned a minor surgery, but before I went to the hospital, he wanted me to have a CT of my abdomen to identify the cyst prior to any procedure. Thankfully, the tech caught just the lower portion of my lungs on that scan and the radiologist noted lung nodules. When I went back to my OB/GYN for my check up, he mentioned the lung nodules and ordered a full chest scan. He informed me that people had benign nodules and they could be there from my severe infection, but that he wanted to just make sure that it wasn’t anything. The next day he called me to inform that the nodules were still there and he would like for me to see a Pulmonary Specialist. I agreed and the Pulmonary Specialist was very concerned about the number of nodules in my lungs which were over 100 scattered across both lungs. He conducted a bronchoscope and a needle biopsy for which both were non-diagnostic and I was then punted to the Thoracic Surgeon. The Thoracic Surgeon removed three wedge sections and sent the pathology off to Mayo Clinic in Arizona. After further molecular testing, my oncologist educated me on the different mutations and the path of treatment that would be taken for each of them. It was determined that I was Stage IV due to both lungs being involved and was positive for T790M. I began Tagrisso as a first line on November 11, 2017. After 6 months on this drug, my last scans read “barely perceptible”. I will keep taking Tagrisso until resistance occurs and hopefully there will be another inhibitor to take its place. When I was first diagnosed, I would literally wake up in the night in a panic. I couldn’t sleep, eat or function normally. I started browsing the internet for support groups and pages as well as social media. I found the LUNGevity private patient groups on Facebook and asked to be added to every single one of them. I began telling my story and people started responding to me and sharing their stories. Strangers were sending me encouraging private messages. I saw people living and thriving with an incurable, life-shortening disease. I found hope. I started sleeping and not crying so much. Finding those support groups really made the initial journey a bit easier. Although we were strangers, we were brought together by a common bond. I’ve since been able to meet some of those people in person through the HOPE Summit and my “family” has grown by leaps and bounds. I would have never met these incredible people without lung cancer. Receiving a lung cancer diagnosis is not something any of us would have willingly signed up for, but I am thankful that I was able to find out before it spread all over my body and treatment options were expunged. I am also thankful for the perspective shift. I now know what it means to live each day with intent. The days of merely existing are over. It’s time to live and love life to the fullest because I now understand the value of each day that I am given.
  16. Becoming Empowered Advocates My wife, Heather, told me about LUNGevity National HOPE Summit and that she wanted to attend. She received a Travel Grant from LUNGevity and I decided to join her at the conference. It is one of the best things we ever did. The wealth of information about lung cancer available through LUNGevity is not comparable to anything I could find in Canada or through any Canadian organizations. LUNGevity is so caring, thoughtful, and cutting edge. Heather and I attended our first National HOPE Summit in 2016. It was so incredibly inspiring. We got to see first-hand that the statistics are just numbers, not individual expiry dates. The number of people in attendence was impressive and the conference was well organized. We met people from across North America who embodied hope and positivity. It felt like a family. The medical professionals at this event were amazing. They spoke with my wife and gave her their contact information if they could ever assist her in any way in the future. After that experience, I felt empowered to become an advocate and to get involved with awareness events with my wife in our home province of New Brunswick. I followed LUNGevity on Twitter and I joined the LUNGevity Caregivers group on Facebook. I started participating in a few of LUNGevity’s LC Caregiver Twitter chats, which are held the first Wednesday of every month. I utilized the #stopthestigma hashtag on Twitter whenever possible. I volunteered to be a LifeLine Support Mentor to provide peer-to-peer support to other caregivers, and I joined LUNGevity’s Social Media Ambassadors to help raise awareness online. My goal is to raise awareness of lung cancer as the number one cancer killer, taking more lives annually than breast, colorectal, and prostate cancers combined, while receiving the least amount of federal funding for research. I hope that my advocacy efforts will help other caregivers through sharing my experience, strength, and hope. Whenever I can, I join my wife in her advocacy work. It is important to us to stay educated on new treatments, research, and changes within the lung cancer community. We continuously meet with Federal and Provincial politicians to educate them about lung cancer, to lobby for equal access to health care, to promote genetic testing, and to demand equal catastrophic drug coverage in Canada. Heather lends her name and story to different publications to spread the word about lung cancer. Through social media, she has connected with doctors and research scientists across Canada to support their requests for research funding. The most recent was through a connection with a very passionate doctor at the Dalhousie University Research Foundation. I hope to help educate the greater public that if you have lungs, you can get lung cancer. It’s not “just” a smoker’s disease and smoking is listed as a possible cause for all cancers. Lung cancer patients do not deserve this disease. I plan to continue to volunteer at events in my area to help raise funds for research and to promote the work and resources available through LUNGevity. And Heather and I look forward to attending National HOPE Summit together this spring.
  17. My Dad was always my Ironman when I was growing up. In 2004, my dad had a persistent cough. He went to the doctor a few times and was finally diagnosed with pneumonia. A year went by and the cough went away for awhile. When it returned, my dad went back to the doctor. He was diagnosed with Stage IV lung cancer. I was 17 at the time. After he was diagnosed, my Dad signed up for Heather Saler’s Lung Cancer Walk in Pennsauken, NJ, which eventually became Breathe Deep South Jersey. My dad didn’t do the full walk, but he was part of the survivor ceremony. I went with him and that was how we found out about LUNGevity and decided to start fundraising. My dad passed away in 2006, less than a year after he was diagnosed, but he taught me so much during that time. I saw how strong he was during his battle. He never gave up and gave it everything he had. My dad was a photographer. When he passed away in February 2006, my girlfriend (who is now my wife) and I put together a show with all of his photos at a local restaurant. People could come just to see the photos or they could buy them to help raise funds for LUNGevity. The second year, people who were impacted by cancer, either themselves or a loved one, donated artwork for the show. My dad was also a runner. He ran several marathons. I ran my first marathon, the New York City Marathon, in 2016. I wanted to strive for something more challenging so I decided to do the Ironman Lake Placid for Team LUNGevity. Lake Placid is the longest running Ironman event in North America and this is 20th Anniversary year, so it will be a great event. It consists of a 2.4 mile swim, a 112 mile bike ride, and a 26.2 mile run. Doing an Ironman is going to be the toughest thing I ever attempt. I wake up at 4:30 or 5:00 a.m. and either swim, bike, or run for about an hour, then go to work, come home, and train again in the evening. I’ll be training for about seven months total. I’ll be posting my Ironman journey throughout my training all year long on Facebook. I’ll also post stories of my Dad and news from LUNGevity. And hopefully when I finish that Ironman, I will be wearing something LUNGevity. If anything is going to inspire me to complete this Ironman, it is my Dad. The least I can do is try to raise money for lung cancer research in his name. Every dollar counts and every life matters. I hope that my fundraising efforts will make a difference in the fight against lung cancer. Maybe it is the dollar that helps find the cure, maybe it helps give someone affected by this disease sometime of motivation or maybe it just makes people more aware of lung cancer.
  18. My wife, Heather’s lung cancer was discovered by accident. She was having an abdominal CT scan when the doctor noticed a small shadow on her lower right lobe. She subsequently had a chest CT scan. The Thoracic surgeon felt it was pneumonia scar but it was too small for a needle biopsy so he ordered a PET scan. We went for the PET scan and the radiologist who did the scan also read it and told her immediately that she did not have cancer. (It was not until a couple of years later that I actually read the report which indicated that there had been mild FDG uptake in the upper left quadrant of this spot.) She started having follow-up CT scans every 6 months. On one scan, the report came back that the spot had diminished in size. We were excited because cancer doesn’t shrink but unfortunately not informed enough to know that positioning during the scan can make a difference. She was then moved to an annual CT scan. Heather had her annual scan in July 2012 and we went to her parent’s cottage at the beach for a couple of weeks. When we returned home there a message on our machine to call the Thoracic surgeon’s office for her appointment. This was a new surgeon as the previous one had retired. She called the office and the receptionist said she was booking her for an appointment to see the surgeon because of the growth in her lung. The receptionist assumed that our family physician had informed us. I immediately called our family physician who was doing rounds in the hospital and asked him what was going on. He didn’t realize that the appointment would be set up so quickly and apologized and we made arrangements to meet at his office. We are fortunate to have such a wonderful family physician who we used as the center for all future appointments and advice. Heather underwent a wedge resection on Labour Day weekend 2012 to remove her tumor. The tumor tested positive for NSCLC Adenocarcinoma and was scheduled for a lobectomy to remove the bottom lobe of her right lung. This operation was performed on the Canadian Thanksgiving weekend in October, along with a wedge resection of a nodule in her middle lobe and Lymph node sampling from the mediastinum and hilar. She was Stage 3a T2N2M0 with metastasis in three different lymph node stations. All her lymph nodes also had vascular involvement. Her oncologist patted her knee and told her that she had a 15% probability of surviving 5 years. On New Year’s Eve, ending 2012, Heather began 4 rounds of chemo, Cisplatin and Navelbine followed by 25 radiation treatments. This has been a journey with many ups and downs with a few scares along the way but she is currently stable and enjoying life.
  19. I was diagnosed with Stage IV Lung Cancer on September 19, 2016. The doctor told us that it was inoperable and radiation was not an option. It felt as though I’d been punched in the stomach. I immediately began thinking of my children and my wife, Lisa, and that my time here on Earth was very limited. I had no words that day, only utter despair. As the initial shock wore off, and the option of getting selected for a trial medication was offered, I realized that I may have a chance at fighting cancer and not letting cancer "fight" me. I’m ALK positive, so I was able to start taking a targeted therapy drug. It was shortly after the diagnosis and when I had no choice but to accept this as my fate, that I made the decision to fight this disease by becoming proactive in my care. I have always been a man of strong faith, and God has not failed me yet. Sometimes it takes something so big to appreciate waking up each day to your family and the people you love! I pray to God every night to give me another day. I was looking for an organization that focused on spreading awareness about lung cancer and funding research. I also liked that LUNGevity provided so many different types of support. We created a team for Breathe Deep Boca Raton, a 5K walk and run that raised lung cancer awareness and funds for LUNGevity for research and support programs. My wife and I are very active in our community, so we started reaching out to people to encourage them to come out and support the event. We advertised in local restaurants and reached out to local schools and youth recreation programs, and got some things going. My kids and I used social media to spread the word and I followed up with phone calls to remind people to show up. A friend of mine is in a band, so we asked them to come out and play live music at the event. Parts of the event are more somber, when we’re honoring the people we’ve lost to this disease, but other parts are uplifting and hopeful when we talk about research and the progress being made. I think the impact in the community is two-fold. First, it helps to raise awareness about lung cancer. I felt so strongly about making sure people realize that lung cancer isn’t only for smoker. And it also brings awareness about LUNGevity and that this a specific organization to help people impacted by lung cancer. I’m grateful for the research and medication and for the support of my family, friends, and the community. I hope the fundraising goes toward research to help find more targeted therapies. We need to fund research for treatment options that increase survival rates and help contain and manage the disease. I’m ALK positive, and there are treatments for that specific mutation, but I’d like them to find treatments for other mutations as well. I still look at the glass half full, because today, I am still here. My loving wife and children stand with me every day in this long, tedious, sometimes unbearable cancer journey. Through my positive energy and prayers we stay strong, and in September 2017, we celebrated my one-year cancerversary!
  20. I first became involved with LUNGevity through National HOPE Summit, a survivorship conference in Washington, D.C. Seeing so many survivors and being able to share our stories and gain knowledge made the experience very special. I’m always impressed by the quality of what I learn and what is shared. The fact that the medical researchers can interact with patients in an intimate setting and participate in the roundtable discussions is very inspiring. Going to HOPE Summit has been a springboard for many other volunteer and advocacy opportunities. At my first conference, I learned about the LifeLine peer-to-peer support program. As a long-term survivor, I wanted to use my story to try to inspire hope in others who were living with lung cancer, so I jumped at the chance to give back as a mentor. Through HOPE Summit, I also got to know Andrea Ferris, LUNGevity’s President, and Katie Brown, LUNGevity’s Vice President of Support & Survivorship. Katie recommended me as a reviewer for the Department of Defense research grant program and I love being part of that. LUNGevity also connected me with Eli Lilly & Co. who produced an Emmy-winning documentary about my family and me. I've attended a congressional luncheon on Capitol Hill with LUNGevity, and a lab tour at Lilly. I was looking for ways to give back in my local community, so a few years ago I started a support group in Fort Myers, Florida. The group provides wonderful camaraderie and community. We meet once a month to share stories and experiences and resources, and we also get together socially once a month. We’re a close-knit group. In 2017, I convinced four members of my lung cancer support group to attend National HOPE Summit with me. We were so inspired that we decided to organize a Breathe Deep event in Fort Myers to raise awareness about the facts of lung cancer. We were able to share our story in local media and even surpassed our fundraising goal. We held the 5K walk and fun run on November 4 to kick off Lung Cancer Awareness Month. Breathe Deep Fort Myers brings attention to lung cancer and the lack of funding and gives us the opportunity to get rid of the stigma. We want to let the people in our area know that you don’t have to smoke to get lung cancer, that two out of three of the people diagnosed are never-smokers or quit many years ago. Being an event coordinator gives me such a feeling of purpose. I’ve been so aimless since I retired from teaching because of my health. Helping others through this event and through the support group is very rewarding. Our number one goal is to provide much needed research funding. We also want to raise money for patient education and support, and help continue to bring top-notch speakers to HOPE Summits. I hope that both the walk and the support group continue to grow and make an impact in the community. LUNGevity is so patient-oriented and offers so much support and information and education that it aligns with my goals. I want to give back to LUNGevity because I feel like they’ve given a lot to all of us. That makes me want to do as much as I can to help support LUNGevity’s mission to improve quality of life and survivorship. Melissa (bottom right) with members of the Fort Myers Lung Cancer Support Group and their families at the 2017 National HOPE Summit.
  21. October 30, 2015 will forever be the day my world changed. That day I heard those words that no person wants to hear: “You have cancer.” I kept questioning how this could happen to me. I was a healthy, 35 year old nonsmoker, and a mom of two great children. I came to learn that you don’t have to be a smoker to get lung cancer. Honestly even if one was a smoker, would it matter? No one should have to go through this terrible journey. Soon after my diagnosis I saw a surgeon and was told that I was not a candidate for surgery, as my cancer had metastasized to the surrounding lymph nodes. Instead of surgery, I was scheduled for 35 sessions of radiation and two rounds of chemo infusion, believing that if the treatment was effective that surgery could be an option to remove the remaining cancer. After my initial chemo and radiation was complete the tumor in my lung had shrunk considerably and lymph nodes appeared to be clear of cancer. Good news, right? Unfortunately, new scans showed that what had been an inconclusive spot on my liver had now grown into a tumor, and my official diagnosis was changed from stage 3b to stage 4. The new tumor meant surgical treatment was no longer an option, and that medicine is my only hope. At that time my husband and I realized it was time to get a second opinion, which turned out to be one of the best decisions of my life. My new oncologist tested my cancer for genetic mutations. At the time, I had no idea what he was even talking about. Then I received a call from him on a Friday afternoon stating I have the EGFR mutation. I could hear the joy in his voice. After doing some research I came to understand that this was a very good thing, and within a few days I started to take a targeted therapy called Tarceva. My quality of life is way better than I would have ever thought possible. I’m now 37 and living with stage IV lung cancer, hoping that medicine advances faster than my tumors. During my initial treatment I was bitter. I did not want to hear “you can beat this” or “you are the strongest woman I know” or “you are a fighter.” I just wanted to get through my treatment and move on with my life. As much as I hate my cancer, it has taught me some valuable lessons. First, it taught me to slow down. I didn’t realize how much I was just trying to get through life, instead of actually living it. Ironically, I enjoy life more now than ever. Second, don’t sweat the small things. Living with a terminal illness helps one understand what‘s really important in life. Kateri and her family
  22. I found out that I had lung cancer back in August of 1999. I had 3 bouts of pneumonia in the first 6 months of that year. The last chest X-ray showed an area of concern. The next step was to have a CT scan of the area. I had the CT and they saw a blockage in my right lung between the lower and middle lobes. I was sent to see a pulmonologist and he scheduled a biopsy. He preformed the biopsy and they found a tumor that was blocking the area of my main bronchi between those two lower lobes. They tested the sample from the biopsy and it showed Non Small Cell lung cancer. I was staged at 2B. At that time they asked if I’d be willing to try a new approach in treatment. I said yes. The new procedure was to give me 6 rounds of chemo then 39 radiation treatments and the surgery to remove my two lower lobes in my right lung. The “old” way was to reverse those steps. Since then they have found no change in survival rates doing it one way or the other. My comment is 18 years and I’m still here. I think it worked great! Of course all these years later things have changed but not until recently. When I was diagnosed the Internet was in its infancy. There were no lung cancer support groups on line or in hospitals. We didn’t live long enough as a group to have a call for them. There were cancer in general groups but I was on the young side of the equation which put me in a smaller population. I wish there had been more groups or on line groups. I had a young family, I owned a small landscaping business and I paid my own health insurance. My wife was a stay at home mom who worked part time. We had decided it was more important to us to have the children have a parent available and I would just work longer. At that time my heath insurance was an HMO and was the cheapest I could find. But this is when the health insurance crisis started. My premium went from under $400.00 a month to over $1800.00 a month in a year’s time. I somehow managed to stay working through treatment and the surgery. Thank you my friends, relatives, and employees who carried a lot of the load. After surgery my wife had to go to work full time to get us health insurance. For a few months we somehow made it without insurance. I started the survivorship journey dealing with multiple doctors’ appointments, testing appointments and running a business. It was not easy but as with anything you make adjustments to fit it in. You have to. The first five years of this survivorship was learning how to negotiate my way. I’m in a physical business. I can’t do what I used to. I had had a bad back for years since the cancer, my back has been great! I can’t swing a sledgehammer or chase a lawn mower or anything rough that I used to do. Instead I worked my way around it. I bought a riding mower, can’t do all the lawns I used to but I can mow larger lawns easier. I can’t move wheelbarrows full of soil, rocks or even plants but I can run a tractor and do it that way. I can’t run anywhere but I walk and I get there slower but not that much slower. You will find new ways to do things and or you don’t do something’s. I remember my wife asking the surgeon what will my husband be able to do after the surgery. He said well if he said he played tennis, I’d say he couldn’t play that anymore. I guess the look on her face made him ask why do you ask. He owns his own landscaping business. Oh, hmmmm, I have never told a patient that they couldn’t do something but you’ll know what you can or can’t do. So that’s how I took how I’d live my life. I’ll try to do everything and see if I can. If I have to perform this or that I will find away. Over time I have realized how lucky I’ve been to survive this long. After a few years I went searching the Internet for someway for me to give back. I found the Lung Cancer Alliance through their website and online support group. That is when I started to talk to anyone who was newly diagnosed with lung cancer. I vowed I would try to make sure that no one would start this journey without someone to say I know how you feel and it’s ok to be scared, alone, and despondent. No one knows what it is like to have someone tell you, you have lung cancer, any questions? As they did to me the very first time anyone even mentioned to me that I had cancer. Scared is not even close to how I felt. I found out about LUNGevity from a couple of survivors who were on another site. I also found that I noticed more advocacy from LUNGevity in respect to serving the lung cancer community, informational posts that I found very interesting and the very active organization that seemed to be everywhere reaching out to those in need. It certainly fit with my own advocacy thoughts about trying to reach out to the newly diagnosed. As a closing thought, try to always keep in your mind, there is always hope, hope not only for today but for tomorrow and the next day and the day after that!
  23. LaurenH

    Nina Beaty

    I was first diagnosed with small cell lung cancer (SCLC) in January of 2014 from a biopsy of the tumor that was sitting on top of my left lung. I had no symptoms I was ill yet I was urged by a radiologist who was a friend of the family to get an early lung cancer detection CT scan of the chest because I had been a smoker years before and grew up in a household of heavy smokers. So for me, it came as a total shock when I was told my diagnosis and “to get into the city for treatment, ASAP. “ For the next two years, I went through the standard treatment for limited stage SCLC, -chemo, radiation to the tumor, and prophylactic radiation to my brain. Good news, the tumor had shrunk but bad news, a new one had begun to grow in my abdomen. Now there was no option left for me except to go on an immunotherapy clinical trial, which I began in June 2015. I know I’m one of the lucky ones. I’ve survived over two years thanks to being enrolled in the clinical trial with the bonus of having virtually no side effects. I first heard about LUNGevity through my oncologist when he invited me to be one of his “patient-guests” at LUNGevity’s Gala in 2016. Encouraged by the speakers and to learn about more about LUNGevity’s focus on increasing the quality of life for cancer survivors and their caregivers, I contacted Katie Brown, LUNGevity’s Vice President of Support & Survivorship, to become a volunteer. I wanted to support other SCLC patients who were probably as confused and conflicted about their choices as I was when I was first diagnosed with this less common type of lung cancer. Katie gave me information about “LifeLine”, LUNGevity’s peer-to-peer support program that matches patients and caregivers to mentors with similar diagnoses. LifeLine mentors forge a personal connection by getting to know their mentee, offering words of encouragement, and by sharing aspects of their own cancer experiences. LUNGevity connected me to my first LifeLine mentee in early 2017. When I’m on the phone with mentees, I try to get a quick take on what that individual would like to get from speaking with me. I usually keep my personal saga with SCLC brief so the mentees have a chance to tell me what’s been on their mind. Sometimes, a particular part of their cancer situation is upsetting or causing frustration, while other times, they would just like to talk it out and have me listen. If I hear we have points in common, I’ll say something like “I get it. X-Y-Z happened to me, too!” Then I reassure them that they will get though it and find the solution that’s right for them. Some mentees just want a one-time chat to know someone else has survived the same illness. Others, who don’t have anyone they feel close to, might call me more frequently. One time I called Katie to get her advice on how to handle a situation that I felt was beyond my capacity to deal with. She was very understanding and together we came up with workable solution. So if you become a LifeLine mentor, don’t be afraid to reach out to the LUNGevity staff. They’re there to support you, too. The most rewarding thing about being a mentor is hearing someone newly diagnosed with SCLC say, ”Oh I’m so glad I talked to you. I feel like this is doable now. If you survived, maybe I can too.” Hope is the most precious gift I could ever offer somebody, which may sound a bit drippy, but it’s so true. I get to offer hope every time I tell my story that I have survived longer than I, or anyone else, would’ve believed possible. Photo credit: Ben Hider for the CURE Magazine
  24. I was 52, a wife, mom and teacher when diagnosed with stage 3a NSC Adenocarcinoma lung cancer in September 2012. I had no symptoms and did not fit the criteria of a lung cancer candidate. An observant radiologist had noticed a small shadow in my lower right lobe when viewing an unrelated abdominal scan in 2010. Because I didn’t fit any of the LC criteria, no specialist or surgeon thought that it would be lung cancer. They adopted a “wait and see” plan using two six-month scans and then moved to a one-year scan at which that point indicated that my “nothing” spot had in fact grown and was probably lung cancer. My world had been turned upside down. I quickly had surgery to remove my bottom right lobe and several lymph nodes. Unfortunately, cancer was found in the lymph nodes and the tumor. This led to four rounds of chemotherapy (Cisplatin and Navelbine) and 25 treatments of radiation along with all the mental and physical issues that many people can only imagine. Cancer can be a very lonely disease even when you have a ton of support. I couldn’t find survivors in my area so I began searching out on-line groups that I could communicate with about my disease. This is where I discovered LUNGevity! The members of this group and all those associated with the organization wrapped their cyber arms around me and welcomed me into their world. This was literally a life-saving experience for me and continues to be part of my daily communication. Two years ago, people in the group began speaking about the National HOPE Summit in Washington, D.C. and how beneficial it was for both patients and caregivers. Because I am Canadian, I inquired as to whether my husband and I could attend. I was told of course we could! My husband and I attended HOPE Summit and that experience has changed my life. Meeting other survivors and hearing from physicians and researchers empowered me to return to my own country and begin asking questions about lung cancer research and most importantly, begin my work as a lung cancer advocate. The Summit allowed me to meet so many people who are advocates not only for their own health but also for lung cancer research and advocacy work. These people meet with politicians, organize, and participate in lung cancer fundraisers and teach so many of us about treatment options. Although Canada does not have as large a network, there is a small group of us who have been empowered to meet with politicians, educate and support others with the disease and spread the word about early lung cancer diagnosis, all because of our experience at a LUNGevity HOPE Summit. Education is power but knowing you are part of a strong, supportive, and knowledgeable group of individuals is invaluable. Thank you LUNGevity!
  25. Here is the weekly clip report, including two big announcements from LUNGevity: MedCity News “A Snapshot of Personalized Medicine in Practice” https://medcitynews.com/2017/10/snapshot-personalized-medicine-practice/ PR Newswire “Alexander F. Stern Named Chairman of the Board of LUNGevity Foundation” http://www.prnewswire.com/news-releases/alexander-f-stern-named-chairman-of-the-board-of-lungevity-foundation-300533962.html Markets Insider “Marc Swerdlow Named Vice-Chairman and Treasurer of the Board of LUNGevity Foundation” http://markets.businessinsider.com/news/stocks/Marc-Swerdlow-named-Vice-Chairman-and-Treasurer-of-the-Board-of-LUNGevity-Foundation-1003678880 Cure Today “Tagrisso Approved for Frontline Lung Cancer Treatment” http://www.curetoday.com/articles/tagrisso-approved-for-frontline-lung-cancer-treatment Medical News Bulletin “Can Genetic Screening Improve Lung Cancer Prognoses?” https://www.medicalnewsbulletin.com/gene-screening-lung-cancer-prognoses/ Cure Today “Personalized Treatment Needed for Advanced Lung Cancer” http://www.curetoday.com/articles/personalized-treatment-needed-for-advanced-lung-cancer Medical Xpress “A New Class of Drugs Aims to Exploit Cancer Cells’ Weaknesses” https://medicalxpress.com/news/2017-10-class-drugs-aims-exploit-cancer.html PR Newswire “Stand Up To Cancer Awards Moffitt $2.67 Million to Study New Lung Cancer Immunotherapy” http://www.prnewswire.com/news-releases/stand-up-to-cancer-awards-moffitt-267-million-to-study-new-lung-cancer-immunotherapy-300535599.html Los Angeles Times “Curing Cancer Isn’t Always the Goal. Sometimes You Just Want It to Be a Manageable Chronic Disease” http://www.latimes.com/science/healthy-living/la-he-hl-cancer-cure-20171012-story.html Los Angeles Times “With Cancer, It’s Not Necessarily Where It Starts but Hot It Starts” http://www.latimes.com/science/healthy-living/la-he-hl-cancer-genetics-organ-20171012-story.html The Wall Street Journal “Immunotherapy Treatments for Cancer Gain Momentum” https://www.wsj.com/articles/immunotherapy-treatments-for-cancer-gain-momentum-1507825152
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