Marilyn Raven

Twenty years ago, on this date, I was handed a surprise diagnosis of lung cancer in an emergency room. The X-ray showed a very large tumor in my right lung that perfectly explained hemoptysis, the reason for my ER visit. My GP admitted me for a diagnostic work-up, and I spent 4-days inhaling albuterol while being scanned, poked, and prodded.
In the hospital, I met my medical oncologist and pulmonologist who told me I had about a 7 x 2.5 cm tumor filling the main stem bronchus of my right lung. The tumor was bulging into my airway causing vigorous coughing and complicating an unsuccessful flexible bronchoscope biopsy. Several drama-filled weeks later, my thoracic surgeon performed a biopsy to reveal squamous cell carcinoma. Unusually, no lymph nodes were involved. Staging was complicated; no lymph node involvement suggested IIIA but size pointed to IIIB.
There were few resources in those days explaining lines of treatment or prognosis.  The American Cancer Society suggested smoking cessation as a treatment method. Dr. Google revealed I might have 6 months of remaining life.
Treatment started with chemoradiation to shrink the tumor and allow a pneumonectomy and ended with precision radiation to fry a reluctant tumor camping in my left lung (metastasis after surgery). I had 4 recurrences and 5 lines of treatment before achieving no evidence of disease (NED) in March 2007. My medical oncologist deemed me cured of lung cancer in March 2021 and then retired from practice.
What have I learned? Medical statistics predicting remaining life by stage and type of lung cancer are imprecise and inaccurate, even today. Why? Listen to this elegant essay “The Median isn’t the Message” by Professor Stephen J. Gould that kindled the first ray of hope for a good outcome.
Depression does not improve by ignoring symptoms. Thankfully, doctors who treat lung cancer today are assessing for depression and referring to professionals. Expect to be depressed and cooperate with treatment.
Faith and hope matter and I believe they influence outcomes. I am a man of religious faith, but faith is an innately human trait. Religion is not required to believe treatments not seen are working to combat lung cancer, and faith fosters hope, and “hope is a good thing and good things never die.”
Finally, consider that if I can live, so can you!
Stay the course.
Tom

Perhaps you've noticed. My activity on this treasured Forum has declined. Folks have inquired. I've been hesitant to respond; perhaps my faith and hope that things might be different caused a lack of candor. I'm nearing 20 years of surviving Stage IIIB diagnosed, Stage IV progressed squamous cell non-small cell lung cancer. Longevity after diagnosis in my day is a miracle. Thankfully it is much more commonplace today.
No, I don't have a lung cancer recurrence. I'm cancer-free as far as I know. My annual oncology consult with low-dose CT is in September but I'm not concerned. My daily trial is pain. I've had chronic pain from taxol (burning toes sometimes called taxol toes) and a constant throbbing at my open thoracotomy incision site. Eighteen taxol infusions have left their mark; three open thoracotomies in the span of 7 months are the painful surgical side effects. Now nearing 73 years of life, 2 Army injuries have joined my parade: herniated disks in my neck and lower back. Moreover, muscle cramping, another taxol-induced problem causing low magnesium in my bloodstream, is worsening. I'm not sleeping, at least not having restful sleep. And yes, my physicians have tried every sleep remedy. My GP is still trying.
In a recent consult with my GP, he advised that I not seek surgical care for my herniated disks. He is concerned about my pulmonary insufficiency, and I'm waiting for my pulmonologist's view. Of course, the orthopedic surgeon counsels little risk. But surgeons are surgeons. My neck and back may be correctable, but I might not survive the surgery. My GP also wants me to ask the pulmonologist about O2, 24/7. I'm currently using O2 at night (attempting to sleep), but 24/7 tethered to a leash would be a new chapter in my life. 
I check the Forum every day and thankfully we have a team of folks who welcome and provide meaningful suggestions and support. I'll be in the wings cheering all on from the sideline. As always...
Stay the course.
Tom
 

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

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

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

Social media platforms like Twitter and Facebook have provided many valuable tools to lung cancer survivors. They provide arenas for us to connect and communicate with other survivors, share our stories with a wider audience, and advocate on a grand scale. And they connect us to life-saving information about our specific lung cancers, research, clinical trials, and experts in the field.
During the pandemic, social media became especially important. Many were experiencing increases in anxiety, depression and isolation. Social media facilitated daily support in our lung cancer community, and made it possible for us to attend lung cancer conferences virtually.
In so many ways, social media has been a lifeline to lung cancer survivors, and has been a true boost to our mental health. However, there are times where connecting on social media can actually do just the opposite – fueling feelings of anxiety, depression or isolation, rather than improving them.
There are times when our news feeds seem filled with news of survivors who are not doing well or who have died. Additionally, advocacy on social media means “putting ourselves out there” and opening ourselves up to feedback that can sometimes be hurtful. Outside of lung cancer, our feeds can also be filled with negative messages or misinformation. And sometimes, even happy posts of others’ lives can make us feel isolated in our experiences with lung cancer.
How do we reap the benefits of social media, without becoming mentally weighed down? Mindfulness and balance are key.
Here are some tips:
-Pay attention to how much time you spend on social media and make sure it is not cutting in to time spent with loved ones, self-care activities or enjoyable hobbies. -Skip quickly over negative messaging and don’t engage in “online arguing”, which is seldom productive. -Be targeted in your scrolling, checking support group posts or focusing only on those who you enjoy connecting with. -Remove social media apps from your phone and only check them once or twice daily on your computer. Lastly, know when to go on a “social media diet” and spend some time away from social media. It will always be there for you when you feel mentally ready to return.

My CT was on August 30th but I needed to wait till today to get the results—from a new medical oncologist. He’s my kind of guy achieving undergraduate and graduate degrees in engineering before going to med school. We talked a bit on how things have improved since the dark ages of my diagnosis. I told him of my rabid scanziety driven by a 12-day dwell from test to results. He told me I’d not receive the same treatment if I was diagnosed today. I told him I was happy I was not being diagnosed today, or was I?
I find inspiration when encountering stirring words while reading. An article about Joshua Chamberlain, a professor of languages and rhetoric at Maine’s Bowdoin College, told of his exploits as the country slipped into the Civil War. Chamberlain knew nothing about soldiering when Maine stood up its first regiment and declined the governor’s offer to command claiming insufficiency. But, he joined the cause as a lower ranking officer to learn how to soldier. He learned well. His leadership and commandership at the battle at Little Round Top during the second day of Gettysburg is still studied by current-day Army officers. For his courage, skill and character in that battle, he was awarded the Medal of Honor.
On dedicating a memorial to Maine soldiers at Gettysburg, 25 years after the battle, Chamberlain asserted “it is character that tells.” Similarly, the tell in surviving lung cancer is character.
Chamberlain said: “What I mean by character is a firm and seasoned substance of soul. I mean such qualities or acquirements as intelligence, thoughtfulness, conscientiousness, right-mindedness, patience, fortitude, long-suffering and unconquerable resolve.”
A “firm and seasoned substance of the soul” that results in “unconquerable resolve” to survive. That essence is built day-by-day as we endure treatments, sometimes cycles of treatment, sometimes cycles-upon-cycles all with uncertain outcome.
What was my scan outcome, you ask? All the typical magic nodules waxing and waning from scan-to-scan showed up. He laughed about me charting their location by spreadsheet. And we had the hypo-dense vs. hyper-dense liver lesion discussion, and a remark about that kidney stone that has been hanging around for 10 years. Then he told me he was reducing my oncology appointments to 1 time-per-year and changing up my scan to a low-dose CT chest type without contrast. He said that interval and type of scan is fully appropriate for one cured of lung cancer. I guess scanziety builds character!
Stay the course.
Tom

Speaking of side effects (at least I was in last week’s column, “Enough Already”) being a regular part of chemotherapy, targeted therapy and immunotherapy; the big three non-surgical options for cancer patients, I am currently experiencing a new side effect which as it happens is a dream come true: weight loss. Which has enabled me to eat to my heart’s content without your typical consequences. Meaning, for now, I can be comfortable in whatever food I eat. As Curly Howard of The Three Stooges might say: “What an experience!”
For my entire life, I have not been thin. Growing up, all my clothes were purchased in the “Husky Department." In spite of that accommodation, my clothes always had to be let in or let out and nothing ever fit. I’ve stood over so many piles of clothes in store dressing rooms which didn’t fit, and made so many “walks of shame” out of the dressing room and onto the floor (where my mother would look me up and down to determine if the shirt, sweater, pants or short I was wearing had any redeeming qualities) that it has left a permanent mark. Most of the time, it was hopeless and I was forced to retreat back to the dressing room with even more clothes to suffer yet another indignity. To this day, some 60-odd years later, I am still traumatized by the years of suffering and humiliation I endured as an overweight child/adolescent forced to buy clothes for the fall/winter and the spring/summer. Oh, how I dreaded those shopping trips into Boston to visit Jordan Marsh, Filene’s and Kennedy’s. If it wasn’t for the two Joe & Nemo’s hot dogs I was promised, the day would have been a total loss - for me.
However, after years of being fat, tubby, obese (per the health and fitness charts), slow-footed and unable to do even one chin-up during those annual phys-ed exams in secondary school; and moreover, never being able to lose any weight or change my diet to facilitate losing a few pounds, I have stumbled onto a surprising and quite unexpected remedy (of sorts): lenvima, my thyroid cancer medicine. A 10 mg pill I take once a day, rain or shine, seems to induce weight loss. Now that’s a side effect with which I can live. In fact, for an eater like me (challenging), living a scan-to-scan existence when the quarterly results determine my immediate future and/or whether my life hangs in the balance, it doesn’t get any better than that. 
After nearly nine months on this treatment, in speaking to my endocrinologist last week, she happened to mention in response to a question I asked concerning my shortness-of-breath side effect, about another side effect: weight loss. Ding, ding, ding. We have a winner (without the chicken dinner). The patient (yours truly) who was apparently originally misdiagnosed with a terminal form of lung cancer (stage IV) instead of what would have been a very treatable and curable form of papillary thyroid cancer, known as “the friendly cancer,”  finally got some good news. Unfortunately, the re-diagnosis came too late and I’m still on a limited schedule, if you know what I mean? (F.Y.I: the nickname given to papillary thyroid cancer as being friendly is because it’s very curable.)
Not that I don’t already eat my share of “comfort” food, but by consuming it so regularly, I usually pack on a few pounds and rarely, if ever, lose weight. My entire life, until this recent lenvima revelation, food had never been just for thought. As a result, lenvima has become my second favorite word after “stable,” (scan results). Now it seems, so long as scan results continue to be stabilizing, I’ll be able to eat what I want and let the chips fall where they may, literally and figuratively.

It all started innocently enough: on Crystal Beach in Galveston, Texas while enjoying a family vacation. Due to 11 years of chemotherapy, I have neuropathy in both feet. As a result, I never walk barefoot, especially on a beach, unless of course, I go into the water. Which on the Saturday before last, I did. When I returned to my beach chair, with my feet all sandy and wet, I elected not to put my sneakers and socks on for the 50-yard walk back to our accommodations. Oh (literally), how I wish I had.
Not 10 feet from the end of the beach was a narrow strip of road (tar, concrete, I can't remember) which we had to cross to reach the grassy margins which would then take us to our house. No sooner had I stepped left, right, left, then I felt like a buffalo which had been shot on the Great Plains, as I immediately collapsed onto a neighbor's yard swearing in pain as I landed, as the heat of the pavement seared through the bottom of both feet. As I sat on the grass with my heels clenched and my toes pointing skyward, I thought,"I'm not going to be able to walk the 25 yards to our house." Somehow, within a few minutes, I summoned up the strength to stand and somehow I managed to hobble my way home. (I'll spare you the details of the excruciating pain I endured walking up  the 20+ wooden steps to get inside our house.)
The following day, I remained inside with my feet off the floor and my socks on angling for some kind of relief. The only times I had to move (to visit the bathroom) were sheer torture. Later that day, I relented and let my wife, Dina, look at my feet. She removed my bloody socks and recoiled in horror. To say it wasn't a pretty sight isn't really stating the obvious. It's stating that I was oblivious. I suffered through the rest of the night, taking only Extra Strength Tylenol for pain. It didn't really work. The next day we drove to Urgent Care.
I was seen within 15 minutes of my arrival. The physician's assistant on call removed my socks and assessed the damage. He said I had second degree burns on the soles of both feet. He prescribed an antibiotic pill, a pain pill, and some medicinal cream. The cream was to be smeared on a non-adhesive bandage, which then was to be placed on the affected areas and wrapped with a self-sticking, ace-type bandage which was to be changed twice a day. I was given my prescriptions and a set of crutches. Soon I was out the door - via a wheelchair, and then Dina drove us across the street to a pharmacy where we picked up our goodies. Finally, we had a treatment plan and relief was in sight. Oh, (literally) how I wish it were so.
The next day was our last day of vacation. Of course I was no use to anybody as the house was cleaned and everyone packed their stuff as the cars were loaded with luggage (and back down those same 25 wooded steps). It was nearly three hours later (after a two-hour car ride) with Dina driving (don't tell the car rental place) as I squirmed in pain, until we arrived at our airport gate with yours truly getting wheelchair assistance.
Circumventing lines to drop off baggage and pass through security, with haste and super efficiency, we eventually were deposited at Gate A17 in plenty of time to make our departure. Unfortunately, the pain had not really subsided. In my mind, I knew I was going to Urgent Care later that night after we arrived home in Maryland. These painkillers couldn't kill a fly let alone the pain from a second degree burn. (We were seen that night at a local Urgent Care around 11 pm. They confirmed the diagnosis, but they prescribed a more serious painkiller: percocet. Which so far hasn't stopped the pain. Dulled it, maybe?)
Back at the gate, while we waited to board, a woman came over to sit next to where I had stretched out across two seats to minimize the pain. Dina explained to her the reason why I had my legs outstretched was because I was injured. She smiled and said: "Would you mind if I ... ?"
Stay tuned to this space for "Still Bedridden in Burtonsville" publishing Wednesday, August 4th.

... and I suppose life is back on, especially for those of us who have been vaccinated. No more hiding your emotions and expressions behind your face-covering as you once again start interacting with the general public. They can see you and, of course, you can see them - and you can hear/understand them, too. Conversations will flow more evenly now that they won't be interrupted by an "Excuse me, I can't understand you," or a "Could you please repeat that?" Conversations that were previously affected by fits and starts will revert back to questions and answers and what abouts. For me, the mask was an impediment to normal conversion. Necessary and prudent during a once-in-a-lifetime, public health emergency, but apparently, the time has comer. Previous directives: masks, social distancing, contact tracing, quarantining and vaccinations were all most of us ever talked about. Now with vaccinations getting into more arms, our lives are expanding. From our living room to just plain living.
Though there are still mask-on requirements - in schools, on public conveyances, and in airports, train stations and the like, and while obtaining healthcare services - we are now, especially those of us vaccinated, free to return to our previous life, mostly. Soon, capacity restrictions will be lifted as our lives, so far as the activities which involve large crowds, both inside and out, can open back up in their entirety. Moreover, social distancing will likewise become a thing of the past. Now, all those round stickers marking six feet of distance as well as the plexiglas dividers will disappear as well. However, individual businesses retain the right to require visitors to mask up. As Bobby Brown used to sing: "That is my prerogative," and so too will businesses have their own prerogative to require patrons - or not, to abide by their mask-wearing requirements.
All of that being said and understood, even though I'm fully vaccinated, I still feel like I should mask-up. From the national vaccination statistics, there are plenty of people who have not yet been vaccinated and/or are unwilling/unconvinced they need to comply. I can't quite understand the "vaccine hesitancy" or the disinterest in following these most recent public health advisories. It seems like such a small, relatively risk-free/preventing risk step to take. I mean, whatever temporary side effects/discomfort one might experience a day or two after the injection pales in comparison to the effect on your body and/or  life expectancy contacting the virus might have. I'll take a definite over a maybe anytime.
Besides, I don't want to be responsible for my own demise, or any others for that matter. In this situation, I'm happy/proud to conform to the public health directives. The virus is bigger - and badder, than any one of us; so to be bigger and badder than the virus, literally and figuratively, the more of us who receive the vaccine, the more of us will be able to survive this pandemic and safely embrace our former lives while not fearing the consequences of our inactions.
The other day at my local Giant, I happened to walk by the customer service desk where I heard a customer bragging to an employee about not planning on getting a vaccination, like he was proud of it. What a disconnect! I'm proud to have gotten my vaccination, and I'm equally proud to have participated in a national effort to try and combat the greatest health crisis this country has suffered since the Spanish Flu first infected Americans over 100 years ago.
I just wish more people would put the country ahead of themselves. For all that we're given here, it really doesn't seem too much to ask. In this circumstance, paybacks are not hell, they're heaven.

... stable, with a side of shrinkage, however modest. No jeopardy here, final or otherwise. Simply more of the same here, but hardly ho hum. A  status quo with which I am fond of writing: I can live. Promises and guarantees left the building on that fateful day in late February, 2009 when an oncologist who I had previously never met summarized my condition and identified it as stage IV, non small cell lung cancer. A "terminal" disease if there ever was one, and of course there are many. And along with that bombshell came the excruciatingly unpopular prognosis: "13 months to two years." I was 54 and a half with no history of cancer in my immediate family.
Much has happened and many medications prescribed since I infused my initial chemotherapy back in early March, 2009. Most of which you regular readers know. If you recall anything from my 12 years of weekly cancer columns, it is that regular diagnostic scans: CT scans, bone scans, P.E.T. scans and MRIs have been recurring nightmares. Every three months, I am scheduled for some type of scan, sometimes more than one ("BOGO," I call it), which based on its findings will determine my subsequent course of treatment. If the results are encouraging, a change in my treatment is unlikely. If, however, tumors are growing, newly appearing or spreading then it's "Katy bar the door," as we say in New England. Which means, hang onto your hat, among other things, as a new health situation presents, and one without an automatic solution. After years of conversations with my oncologist, I've learned: The best one can hope for is a definite maybe. It's this unpredictability which fills my day - and night.
Nevertheless, my life has gone on way longer than my oncologist anticipated. It may be because I was misdiagnosed (as a Georgetown Cancer Center oncologist suggested) and had a slow moving form of papillary thyroid cancer rather than an aggressive form of lung cancer, which kills more often than it cures. Or, I may simply be my oncologist's "third miracle," as he's fond of saying. Presumably, my positive attitude and good humor about my circumstances in conjunction with the many supplements I ingest with alkaline water exclusively have contributed to my unexpected survival. Regardless, as Frankenstein might have said: "I'm alive."
As scary as Frankenstein, Dracula or Lon Chaney ever was, a cancer diagnosis tops them all. Being told by a doctor you have never met that you have two years to live, at best, is as you might imagine, nearly impossible to process. It's not exactly what you had planned on or expected hearing when you sat in the doctor's office. Yet, as Ralph Edwards used to say, "This is your life." And as many others have said: "You're stuck with it." And as grim as you feel about your future, this is no fairy tale. As always, reality beats make-believe any day, and in this instance, not in a good way.
But I am in a good way. I am still typing, among other activities. And after having just received a "looks good" comment from my oncologist concerning this week's CT and bone scan, my warranty has been extended for another 90 days, when the results of my next quarterly scan will be emailed. Until then, I am in high cotton. To say I'm not worried is of course naïve, but in the interim, between scans, I am in "the rocking chair, good buddy," to invoke a familiar CB-ism. This is how many cancer patients live: from one scan to the next. It's not ideal, but it is a living, and one for which I'm extremely grateful and fortunate to still have. It may not have been the life I expected, but I'm glad to live it nonetheless.

Hello Everyone!
I'm not new. In fact, my Adenocarcinoma (Pancoast) lung cancer journey began in October 2004. I was diagnoised at State IV. Mets to chest wall and liver. I was given 2-6 months with treatment and 1 to 2 years with treatment. I've had reocurrences. One time, I was told to get my affairs in order. Yes, I'm still here. Thank God. It started off crazy (as I would imagine, everyone else did too). But, what I am searching for are connections.  People like myself. Someone to relate to. Anyone who has the same issues (or close) as mine. I have had my share of issues over the past (soon to be 17 years). The feelings, the thoughts they keep coming back to a word I discovered a few years ago. Guilt. Then there is the treatment. I'm still on Tarceva. I've been on Tarceva since 2005. Sometimes I feel stuck in time. The world moves on. My issues might be unique. I don't know. Sooo....
I have lost so many friends and family members during this 17 year survivorship. I can no longer count them on my fingers. I meet people at my checkups and I want to encourage them. But, I know in my heart they are asking WHY NOT ME??? You see, there is no reason. There is no medicine. No answer. Nothing I've done or didn't do. It was all out of my control. I've got nothing to say. No support. No advice. No secret. Nothing. That leaves me feeling like a failure. Like I'm not doing what was intended for me to do. But, what exactly is it I'm supposed to do? 
Doctors see me at my checkups. They read the scans. They check out new areas of interest. They say I am a miracle. I go back and forth between 3 month checkups to 6 month checkups and now again I have graduated to a yearly checkup. Please do not misunderstand, I am grateful. I am scared too. I am always scared. 
When I was diagnosed, my son was 6 years old. I grieved all the things I would miss. I have a 9 month old granddaughter now. Imagine that. I have everything to be grateful for. Yet, this old feeling seeps in. I think it's called Survivor Guilt. And I know it's a lonely place to be because there aren't many. I want more! I want you to know that I cry for you. All of you. I am so sorry that many of you are going through the worst fight of your life. Make everyday count. That's all I can do. That's all I did. I talk to God alot! I no longer take things for granted.  I am not a miracle. I am so much less. And Everything and Everyone I see is so very beautiful and so precious. Life has it's share of hard times. This body, this Cancer did not define me! I continue to turn it into a Blessing. Not an End. My body may end one day, but I won't. 
Since I am always searching for the Why (because I am human) I ran across this and I thought it would be worth sharing...
Isaiah 57:1-2 King James Version
"The righteous perisheth, and no man layeth it to heart: and merciful men are taken away, none considering that the righteous is taken away from the evil to come.
He shall enter into peace: they shall rest in their beds, each one walking in his uprightness."

Could this be the day in America whose meaning has been forgotten?
On this day, many in my neighborhood and small town knowing I'm a retired soldier will wish me "Happy Memorial Day!" While I appreciate the salutation; I'm befuddled by our collective loss of understanding and appreciation. Memorial Day is a day of remembrance and commemoration for those who died in the act of serving in our Armed Forces during war.
There is a parallel of a lack of understanding and appreciation that applies to members of our forum. When folks learn of my lung cancer diagnosis, they retort, offhandedly-- "Oh you smoked!" Again, I am befuddled by that response. So, I'll add to my thoughts and commemoration, those who died by lung cancer because officials of our nation believe that smoking cessation is the only effective method for treating lung cancer.
We commemorate those who have fallen, under arms or by lung cancer.
Stay the course.
Tom

As previously referred to in a recent column, even though I am hardly cancer-free; nonetheless, I am cancer interruptus for the next four weeks. That means I have no cancer-related activities: no lab work, no scans, no infusions, no injections, no appointments, no video visits, no interaction whatsoever. Other than taking my daily thyroid cancer pill (the side effects of which are marginal at worst), with which I ingest another 50-plus pills (supplements and so forth), I am, too quote my late father, "unencumbered" by my less-than-ideal circumstances. I wouldn't say I'm actually on vacation, but I'm certainly willing to say, there's a definite break in the action. It's not exactly a "staycation," nevertheless, it is a positive occasion, and one with which I can live.
Not that being diagnosed with "terminal" (originally) cancer and/or still undergoing active treatment is ever fun; tolerable is as grandiose a description as I'll accept. However, four weeks without any involvement with my oncologist and endoicrinologist or with any health care-related staff, puts a real bounce in my step; my neuropathy notwithstanding. Though I have difficulty walking and especially running, I am, for the next four weeks anyway, on easy street, figuratively speaking. The psychological wear and tear us cancer patients (especially the ones characterized as "terminal") endure is ever present and any excuse/opportunity to let one's mind wander to a place other than your presumptive demise, is a mental trip very much worth taking.
Oddly enough, a month of not having anything to do with my cancer team/healthcare facility is hardly the norm. Usually, there's more than enough cancer-related activities to keep me preoccupied. In its own unique way, the nothingness is kind of challenging. I keep looking over my shoulder, almost literally, as the great Satchel Page once said ("to see if anybody's gaining on me") , and flipping the pages on my appointment book to see if I've whiffed somehow on some of my usual and customary obligations. I mean: it is so rare to be so disconnected when you've been diagnosed with a "terminal" disease. As you might imagine, cancer treatment is very hands-on. Not much is left to chance. Moreover, cancer is very unpredictable and insidious. Often it is in control, despite the oncologist's best effort. To be thrown into this cancer-centric world after mostly standing still, healthwise, for 54 and a half years, is a fate not worse than death, but one, depending on the type of cancer you have, which could very well lead to a premature death.
After decades of neglect, the last 15 or so years has seen a huge increase in funding for lung cancer research which in turn has led to more than a dozen new drugs - and an entire new class of drugs: immunotherapy,  for the treatment of lung cancer. The result has been increased survivability and quality of life for those of us so diagnosed. And very directly, I have been the beneficiary of some of these drugs: avastin, alimta and  tarceva having been my life extenders. Where despair once dominated the initial prognosis, now there is hope. It's not so much a cure as it is a way to make cancer a chronic disease, one which requires a lifetime of monitoring, like diabetes, as an example; but it's potentially for a lifetime, not for a life with very little time.
At this immediate juncture, I am being treated, but still living my life - outside, and rarely ever in a medical facility. Not having to endure the ongoing exposure and reminder that I have cancer and a shortened life expectancy to boot, enables me not only to breathe easier, but also allows me to take an occasional deep breath as well. A deep breath which doesn't lead to a coughing fit, a fit which, for us lung cancer patients is never a good sign.

I’m telling this story so that others who find themselves in a similar situation, ask this question, “What about the “Roscopal effect?”
 
When diagnosed with NSCLC-mucinous adenocarcinoma, in the summer of 2017, I believed that my medical team had all the answers when it came to my treatment. However, after a lower left lobe lobectomy in September 2017 (with an 8.3 cm mass), I started to ask more questions and gather more information. My thoracic surgeon and I decided together that the next course of action should be removal of my upper right lobe which was done in October, 2017 via open thoracotomy (with a 9.7 cm mass). Both surgeries had clear margins and did not have lymph node involvement. Biomarker testing revealed that both masses were basically identical, KRAS G12D. Surgery was followed by chemotherapy in Jan and Feb 2018, “to be sure any microscopic cancerous cells were killed.” I was NED (No Evidence of Disease) until about October 2018. Follow-up CT’s started to show gradually increasing “spots” in both sides of my lungs. Since there is not a targeted treatment for KRAS G12D, I went into a clinical trial in May 2019. This was for a personal cancer vaccine with immunotherapy (Tecentriq). Follow-up CT after 8 weeks on the trial showed accelerated growth of the cancer in both sides of my lungs so the trial was ended. After reviewing upcoming trial research, it seemed that the best course would be to wait for a trial to activate that included SHP-2 and MEK inhibitors. However, as more and more time crept by, the trial was not available. The Covid pandemic most likely contributed to this. At this time, I contacted a radiation oncologist to see if there might be a potential treatment for me with radiation. The day my radiation mapping was complete for standard radiation, the email about an available slot for the trial appeared and I needed to make a decision. So, in December, 2020, I started the Phase I clinical trial that involved taking oral medications (RMC 4630 and Cobimetinib). Follow-up CT after 8 weeks on the trial showed accelerated growth of the cancer on both sides. The mass in the lower right lobe was now about 9 cm in size. My oncologist suggested the next line chemotherapy (Taxotere/Taxol and Ramucirumab), but I remained skeptical about my odds of doing well with that approach. 
 
Here is where the story gets more interesting. 
Since my diagnosis I had been connecting with the online Lungevity forums. I found the supportive community helped me tremendously and I was also offering my own experiences to others. In the summer of 2020, I started attending the Friday night Lungevity zooms. Soon, I was participating, as often as possible, on Friday nights. One of my friends in the group, a 17 year lung cancer survivor, Tom Galli, suggested that I contact my radiation oncologist again, and ask about a form of SBRT or what Tom likes to call “precision radiation.” Tom explained to me about the abscopal effect, and somehow I knew that I had to give it a try. What did I have to lose? 
 
The Wikipedia definition states, “The abscopal effect is a hypothesis in the treatment of metastatic cancer whereby shrinkage of untreated tumors occurs concurrently with shrinkage of tumors within the scope of the localized treatment.”
 
I reached out to my radiation oncologist and his initial response was that the abscopal effect rarely works, so what’s the point in doing it? I suggested that since I didn’t have any other viable options, it would be worth trying, because I really believed that the “Roscopal effect” would work. After consulting with my medical oncologist, he called me back and agreed to try 7 sessions of VMAT, (Volumetric modulated arc therapy), aimed at the largest tumor in the lower right lobe, however, he further stated that most likely it would not be successful. From February 18-26, 2021, I underwent 7 VMAT sessions. Then, I had my follow-up CT on March 20th. 
The results were available on the portal on Sunday March 21st. My instincts were correct. The CT showed reduction not only in the area targeted by the treatment (lower right lobe mass), but also in all cancerous areas in my right lung. In addition, the cancerous areas in my left lung also showed reduced size. When my doctors connected with me on Monday, they were amazed and surprised by the results. I was the only one who completely expected the “Roscopal effect” to occur. My radiation oncologist continues to be cautiously optimistic and is eagerly awaiting results of my next CT scan at the end of May to see if there is stability or further reduction. I want everyone out in the lung cancer community to know that it’s definitely worth the shot. Even if my joy in having my first CT that showed reduced size in the cancer might prove to be short-lived, it has been worth every moment. This needs to be studied and hopefully clinical trials will occur to find out which patients would benefit from this form of treatment. I believe that if it wasn’t for my Lungevity connections and Tom Galli specifically, this would not have happened. Everyone needs to be their own advocate and push for the treatment that feels right. I did that and the effect-”Roscopal.”

 

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.