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  1. Susan Cornett

    5 Years!

    Today marks 5 years since my diagnosis. It seems like just yesterday but also a lifetime ago - at the same time. It brought me to the club I never wanted to join but introduced me to so many wonderful people. I am thankful for my medical team and all of the research and advancements that got me to this point. Looking forward to marking next year's cancerversary with all of you.
    9 points
  2. Tom Galli

    Scanziety Builds Character

    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
    7 points
  3. 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."
    6 points
  4. Let's Bend the Rules for All the Right Reasons By: Amanda Nerstad This pandemic has been hard on everyone. Covid-19 is scary to me, especially as a stage IV lung cancer patient. I have followed all of the rules. I mask up when I go out, I choose to stay home as much as I can, I’m not visiting other homes, our family is not taking visitors in our home, we use grocery delivery services and we do our best to keep everyone healthy. I’ve had to explain to my daughters why we are choosing not to attend parties of friends, visiting family, having sleepovers, etc like other people we know. I understand their risk of dying is different from mine. I have done my research, have facilitated virtual calls with lung cancer doctors about Covid-19 and I know I have a 33% risk of dying if I get Covid-19. I have stayed quiet and followed the rules. After being diagnosed with a terminal disease, I learned to notice the winks from God and realized that it is ok to bend the rules for all the right reasons. We took our girls out of school last year to celebrate their birthdays. We place our children’s schooling as a high priority, however we did take them horseback riding to celebrate my daughters special day....for all the right reasons. While attending virtual school, my daughters history essay was denied and recorded as “incomplete”, because it was not a two page essay. Instead she made a creative video as if she were standing on the stage of a Hamilton play. She was rapping every word while giving facts dressed up like Paul Revere. All this was done with a big smile on her face. My email response to her teacher was.... Sometimes it’s OK to bend the rules for all the right reasons. Yesterday I saw a lung cancer friend post on Facebook that she was denied a covid vaccination shot. At the same time, her husband was allowed to get the vaccine because he is a teacher and considered essential. Although they had over 60 cancellations she was turned away. So I am asking BOLDLY and unapologetically to every healthcare center and every Governor..... Give lung cancer patients access to a life-saving vaccine. Let’s change the guidelines, let’s bend the rules......FOR ALL THE RIGHT REASONS! Make your voice heard through the LUNGevity Action Network! Submit a comment using our template about why lung cancer patients should be prioritized for the vaccine >> https://action.lungevity.org/take-action-on-cdc-vaccine-distribution-plan/
    6 points
  5. 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.
    5 points
  6. Being part of the lung cancer community for almost 5 years now, I am often in awe of the fiercely close, supportive and loving connections that are made between its members. We learn together, advocate together, and celebrate life together. And, when someone in our community dies – which unfortunately happens often – we mourn together. For many, it is a deep grief we feel – for the person we lose, their loved ones, and ourselves. Yet during the COVID-19 pandemic, many survivors have had additional grief – grief over moments and experiences we have lost. And the pandemic has been a thief of so many of them. Like everyone in the world, we want to be with loved ones, hug, celebrate, and travel. And we want to be physically present when it is time to support a fellow survivor, or to mourn one. Losing moments and experiences like these can be much more devastating to those living with Lung Cancer. Our heightened value of the preciousness of time can make our grief more potent and complex. If you are experiencing grief, what can you to do to take care of yourself? Processing grief is a very individual experience. However, the most important thing I encourage is for you to experience every feeling, no matter how painful and disruptive. If you push your feelings aside, they will inevitably find their way back to you, and usually in ways that are more difficult to heal from. Talk to trusted friends about your grief. Write about it. Express your grief artistically, through art, music or poetry. And for those who are struggling, therapy can be so helpful, as most therapists have a great deal of experience working with grief and loss. Lastly, don’t forget to check in with your loved ones who are grieving. Connecting, even if not in person yet, can be a lifeline. 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.
    5 points
  7. Today I celebrate 17 years surviving lung cancer. COVID is a nightmare. But, I am celebrating nevertheless. Life after lung cancer is precious and most worthy of celebration. You might note I’ve run out of toes to paint. I do this to honor Phillip Berman, MD, a radiologist with Stage IV lung cancer, who was instrumental in my survival. Phil resolved to paint a toenail red for each year he survived “this madness.” He painted 5 before passing; I continue the tradition using LUNGevity Blue. My reason is: if I can live, so can you. Stay the course.
    5 points
  8. Lisa Zarov

    Lung Cancer and Worry

    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.
    5 points
  9. 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.
    4 points
  10. Baseball is a game that requires patient players and fans. Like lung cancer treatment, there is a lot of waiting for something to happen. Also like lung cancer, the game is unpredictable. A single pitch can change the outcome of a game like a single cell can change the outcome of treatment. And like lung cancer, baseball has many uncertainties and these are defined by odds. The best hitters succeed a little better than one in three times; the best teams winning about six in ten games. Baseball players need to persevere against low odds of success to achieve victory. So do lung cancer patients. A lung cancer diagnosis is devastating. Recurrence after treatment is common and traumatizing. We ought to prepare for the distress of recurrence. Treatment, even for those diagnosed at early stage, is not likely to be a walk-off home run. I was not prepared for treatment failure. How common is recurrence? A National Cancer Institute study suggests about 33 percent of stage IA and IB patients experience a reoccurrence. Up to 66 percent of stage IIA, IIB, or IIIA experience a reoccurrence. Interestingly, these percentages are virtually identical for both adenocarcinoma and squamous cell lung cancers. What about stage IIIB or IV disease? The study reports recurrence about half that of lower stages but suggests this is due to competing risk of mortality. Including surgery, my treatment success average was a dismal 1 for 5. That translates to a baseball batting average of .200, yielding a quick trip to the minor leagues. I had four recurrences after no evidence of disease (NED) treatments. We didn’t know perseverance was a requirement and we were not prepared. How should we prepare? Here is what I didn’t do. Have a frank conversation with my oncologist seeking information on recurrence likelihood. Share this information with my family to ensure they were prepared for bad news. Finally, celebrate my NED state by fully engaging in life. NED is that extra life treatment buys and we did not take maximum advantage of it. A sidebar benefit of surviving is accumulating lessons learned. I now completely understand that lung cancer is a persistent malady that is difficult to eradicate with unpredictable treatment outcomes. Like the best baseball players, we need to take our turn at each new treatment with a fresh perspective, forgetting our last experience and striving only to put the ball in play and arrest our disease. Stay the course.
    4 points
  11. Tom Galli

    On Memorial Day

    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
    3 points
  12. LCSC Blog

    A False Sense of Security

    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.
    3 points
  13. Roz

    The Roscopal Effect

    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.”
    3 points
  14. Tom Galli

    Comprehending the PET

    Almost every lung cancer survivor has a positron emission tomography (PET) scan these days. Now, a PET is often given with a computerized axial tomography (CT) scan. The diagnostician is a radiologist; a discipline that does not write in lingua franca. What do the report words mean? Here is a summary of my August PET-CT to interpret radiology speak. INDICATION: (Why am I getting this scan) “The patient…with non-small cell lung cancer of the right main bronchus diagnosed in 2003 status post pneumonectomy….He has undergone previous surgery for bronchopleural fistula repair…Chemotherapy last administered May 2006…Cyberknife therapy for recurrent disease in March 2007…He more recently has cough and chest discomfort.” That’s me, no doubt, but this summary is important. Radiologists see many scans and sometimes results are misreported. TECHNIQUE: (Test scope and method) Note details about the accuracy of the CT. “These images do not constitute a diagnostic-quality CT….” The CT results help to precisely map or locate the PET results but cannot generate a diagnostic grade image. COMPARISON: (Other scans reviewed while looking at this one). “Report only (no image reviewed) from PET-CT 3/8/2013. CT of chest and abdomen 8/22/17 (looked at image).” A CT scan is normally performed first. PETs follow and accuracy is enhanced if the radiologist has access to prior images. To improve access, have all your scans done at the same medical facility. FINDINGS: (The result) “…showed no convincing PET evidence of FDG-avid (fluorodeoxyglucose — radioactive tagged glucose seeking) recurrent or metastatic disease.” This is what we want to see in the first sentence. Then, the radiologist peels back the onion with detail. “There is mild heterogeneous hypermetabolism (diverse increased rate of metabolic activity)…with a few small superimposed foci (above the hypermetabolic area that is of particular interest)…more intense activity showing a maximum SUV of 3.5 (SUV — standardized uptake value)….When compared to [past reports] uptake…showed SUVs ranging from 2.6 to 2.9. This is strongly favored to be inflammatory.” Relief —this is my chronic pain site caused by 3 thoracic surgeries in the same location! “A somewhat retractile appearing mass (drawn back into lung tissue)…in the left upper lobe is stable in size…This shows minimal uptake…and is most compatible with the site of treated tumor.” My CyeberKnife-fried tumor scar. I do love precision radiation! What are concern ranges for SUV uptake? First, consider what is measured — cellular metabolic rate; more simply is demand for glucose, the fuel of metabolism. Cells with high metabolism ingest more tagged glucose. The PET shows differences in consumption (uptake). SUVs below 2.0 are normal. SUVs above 2.0 are suspect but between 2.0 and 4.0, uptake could be from injury or inflammation. Readings above 4.0 tend to be cancer but there can be other explanations. Higher than 4.0 is likely cancer, especially when paired with a CT find. Cancer demands glucose to fuel mitosis or growth by cellular division. Get and keep copies of all your diagnostic imaging. Keep track of the findings. I use a spreadsheet to record date, location and indications. Dr. Google is a great source for medical definitions. The best possible outcome for any scan is NED (no evidence of disease). May NED be with you. Stay the course.
    3 points
  15. LCSC Blog

    Hardly the Same Thing

    It may not have been the miracle I was hoping for: shrinkage or tumor disappearance, from my most recent diagnostic scans but no growth and/or new metastases is nothing to be taken for granted. However, I did experience a miracle of sorts when the envelope I received at home from the "State of Maryland, Maryland SafeZones Automated Speed Enforcement" authority specifying and picturing yours truly exceeding the speed limit by 12 mph was for information purposes only. It was not an invoice. It was a warning. And the $40 fine associated with this kind of infraction was left on the cutting room floor. Perhaps this is the extent of the miracle that Solange was able to perform when she prayed for me and my burned feet - and thyroid cancer, on July 20 in the Houston airport. Though this outcome was not exactly the delusional outcome I was hoping for, when we consented to her extremely kind offer to pray for me. Nevertheless, a win is a win. And though a shrinking/disappearing cancer tumor would have been an amazing - albeit unlikely outcome, the tumors remained "stable" and I saved a $40 outlay. On balance, not a bad day's work. For which I am extremely grateful. Soon after I entered the cancer-patient world, I learned that any not-automatically-bad news - whether internally or externally to that world, should be acknowledged and appreciated. Any port in a storm you might say. Moreover, I always sought to find the positive in this sea of negativity. Whatever I could see - through any rose-colored glasses I could find, served its purpose to emotionally support me for the many long and lonely nights that followed. Certainly, there's family and friends to help share the burden brought on by a "terminal" diagnosis, but at the end of the day, literally, it's sort of you and your thoughts. Finding a way to navigate this minefield of unpredictable results and anxiety is paramount. On the one hand, you can't take what the doctors and radiologists say as seriously as a cancer diagnosis obviously is, but neither can you pretend that you're not in the fight of your life. That being said, one must be open to new ideas and unexpected offers. Filtering and interpreting whether any of the suggestions made by your doctors and/or your well-meaning friends and family becomes your lot in life. And it's an awful lot at that. Still, a cancer diagnosis is not nearly the death sentence as it used to be for the previous generation. Though it would be naïve to characterize a cancer diagnosis as an opportunity, nevertheless unceasing research in a variety of hospital/cancer centers, medical schools, clinical trials, pharmaceutical companies and the like have led to an evolution in the treatment in cancer, particularly non small cell lung cancer which is the type of cancer I was originally diagnosed with in late Feb., 2009. (Though I am now being treated for papillary thyroid cancer as you regular readers know. As to whether I ever had lung cancer, the jury is still out, not literally.) And since I have an incurable form of thyroid cancer, as written about numerous times in this space, I am forever open to new experiences that might create a path forward for me. The underlying problem in my situation is the odd circumstances that ultimately led to my more recent diagnosis. Since I had years of heavy-duty chemotherapy while treating my presumptive lung cancer, I have suffered kidney damage which only manifests itself in lab work and in what medications/treatment I can be given. As such when I went to the hospital after my thyroidectomy for post-surgical eradication of the remaining thyroid cancer that the surgeon was unable to remove, the dose of nuclear isotopes I was given was only one-third the dose it should have been had I not been so previously chemotherapy-damaged. As a result, I'm sort of stuck. I have a usually curable type of thyroid cancer which is now considered incurable. The solution? I need to find a clinical trial for patients who have been treated for lung cancer for nine years, perhaps mistakenly, suffered irreparable kidney damage from those years of toxicity, who now has been diagnosed with thyroid cancer and who is now unable to process the medicine likely to cure him and thus is: incurable. You bet I need a miracle, and sooner rather than later. Maybe I should fly back to Houston.
    2 points
  16. 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.
    2 points
  17. ... 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.
    2 points
  18. LCSC Blog

    The Masks are Off ...

    ... 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.
    2 points
  19. Roz

    The Roscopal Effect

    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.”
    2 points
  20. LCSC Blog

    Cancerversary

    I realize I'm cancer-centric, especially in these columns, but for some reason that centricity didn't acknowledge my February 27th cancer anniversary. That date, in 2009, is when I was originally diagnosed with stage IV, non-small cell lung cancer, the "terminal" kind. I remember it well. It was a Thursday. It was the initial Team Lourie meeting with my soon-to-be new best friend: my oncologist. A week or so prior, I had received the first indication - from my primary care physician, that my life was about to change: the results from the previous surgical biopsy confirmed a malignancy. It's rather an awkward dynamic to meet someone - for the first time, who immediately becomes the person who will control, manage and, in effect, be responsible for whether you live or die, and for how long. From then on, he becomes the most important person in your life; a person who is now entrusted with your most precious asset: your health. It was not an unfamiliar experience for me meeting someone cold and attempting to build a rapport. As a long-time salesman, that was my modus operandi. Whether in person or over the telephone, I have regularly been engaged in this kind of pursuit: trying to create an environment of trust and honesty in order to reach a shared goal. Previously, it was about making a sale; now, it was about understanding my options and agreeing on a course of treatment. However, the one major difference between these two pursuits was control, or rather the lack thereof. Cancer was now in control as compared to my life as a salesman where I chose it because it allowed me to be in control: who I called, when I called, scheduling appointments, et cetera. Soon it became apparent, I was no longer in Kansas anymore. I was in the hands - figuratively speaking, of my oncologist - in Maryland: my new boss. If I wanted to live beyond the "13 month to two year" prognosis I was given, I would have to be as attentive and compliant as possible. In spite of our shotgun-type of relationship, we have persevered together, which has enabled yours truly to acknowledge, albeit a week or so later, an amazing achievement: 12 years and still living. Not that my circumstances have become de rigueur, hardly; especially since the thyroid cancer diagnosis of late has put into question my original non-small cell lung cancer stage IV diagnosis. Apparently, after making a few inquiries, it appears unlikely that we can litigate the past any more than we can guarantee the future. It seems that cancer, whichever type, will be a part of my life and likely a part of my death as well. I'm surprised how it's (my life) all turned out and grateful to whomever for what I'm not entirely sure. Nevertheless, somehow it's worked and here I am: alive and reasonably well. Not cancer-free and never to be cured of my stage IV papillary thyroid cancer; still, it's a living and it sure beats a dying. Treatment and scans and all will continue, but so what? Originally it appeared my die was cast, but as it has happened, not nearly so fast. All of which is nothing new, really. A cancer diagnosis is all about change, ceding control, and hanging on for dear life as you will be up and down and all-round, emotionally, physically and spiritually. Expecting a normal kind of pattern to your future life ended the moment a biopsy confirms a malignancy. Either you adjust to the vagaries of your cancer life or you will die having failed. I think I have succeeded beyond my wildest expectations. So much so that I didn't even acknowledge my "cancerversary" last week. I guess I needed the week off from worrying about it and didn't even realize it. I have to admit though, it felt good not focusing on it for a change. Almost like I was a "normal" person.
    2 points
  21. LCSC Blog

    Back to Abnormal

    Well, those last two weeks were kind of fun (comparatively speaking) to the dozen or so previous weeks. 'Fun', when you're a cancer patient experiencing side effects from treatment, is a moderation, absence even of said effects. My recent two-week break from taking my thyroid cancer medication was due to those side effects. Mentioned in a previous column, I was having balance and dizziness issues. In short, I couldn't walk or drive - for that matter, in a straight line. After consulting with my oncologist who deferred to the oncology pharmacist who's been monitoring/adjusting my medication dosage, it was agreed that I should cease and desist until my symptoms subsided. As of this past Thursday, my symptoms had mostly disappeared so I have resumed my treatment, albeit at a lower dose. (This will be the second reduction in my dose since we've been trying to find the sweet spot where the tumors are stable and the side effects are manageable.) Actually, these last two weeks of being side-effect free was more than just a break in the action. It was a revelation of sorts. The infirmity/muscle weakness I was having was not due to the older age I have become. It was the medication. During this past fortnight, I began to feel like myself again. I could get in and out of chairs without pacing myself. I could roll over in bed and pull up the covers without a fuss. And of course, I could walk and drive a straight line. It was wonderful. When one is in the midst of a cancer diagnosis/existence, any indication that your bodily functions are performing "within normal parameters," to quote Lt. Comm. Data from "Star Trek: Next Generation" is somewhere between reassuring and life affirming. Generally speaking, we all know that cancer doesn't make its diagnoses big and strong. Realistically speaking, you're happy with normal. Conversely, when 'normal' isn't how you feel, it's hard to portend that death/disability is not fast-approaching. Moreover, it's an especially slippery slope when one has been given a "terminal" diagnosis originally and more recently had that diagnosis modified to include a second type of cancer: papillary thyroid cancer stage IV, to go along with my pre-existing non small lung cancer, also stage IV. One has to fight emotionally to keep from getting lost/going down that rabbit hole. Any good news/an unexpected positive reaction with your disease, like your mind and body returning to pre-cancer normalcy is about as good as it gets. So even though I'm back on the medicine, I feel empowered, upbeat, hopeful even. To that end/continuation of life, I am not going to worry yet that the reduced dose will allow my tumors to grow. I'm just not going to go there. What would be the point? I'll find out soon enough, a few days after my next CT scan in mid-March. Until then, I am going to bask in my semi return to glory. Speaking of 'glory,' as a cancer patient, one has to grasp and hold on to anything of emotional, physical, psychological or spiritual value. In addition, what information you receive which is not particularly positive, in that it's premature/unproven/not corroborated by science, has to be compartmentalized. As with Jerry Seinfeld, you have to put it in the vault and almost throw away the key. Allowing negative possibilities or unpalatable scenarios to take root in your brain really does a disservice to your potential survival. Ever since I was diagnosed with a "terminal" form of cancer, I've tried not to put the cart in front of the horse, if you know what I mean? The diagnosis was bad enough on its own. I didn't/don't need to make it worse by pilling on. If and when my life becomes more challenging/more cancer centric than it is now, I'll deal with it. I don't need to bring it on any sooner than is absolutely necessary. I've had 12 years I wasn't expecting since receiving an initial "13 month to two" year prognosis. Twelve years later, I don't see any reason to change my approach.
    2 points
  22. LCSC Blog

    New Year, Old Problem: Cancer

    As I sit and write here, with too much time on my hands, I can't help but consider my lot in life. In a little less than two months: Feb. 20, I will celebrate (if that's even the right word), the 12-year anniversary of my original cancer diagnosis. On that date, I received a phone call at work from my internal medicine doctor advising me that the previous week's surgical biopsy indicated a malignancy in my lungs. The following week, Team Lourie was sitting in an oncologist's office waiting for the other shoe to drop. And boy, did it drop: non-small cell lung cancer, stage IV. Accompanied by a "13 month to two year" prognosis with very little encouragement or statistical probability to give us much reason to hope. In answer to our predictable question, the soon-to-be my oncologist offered up a tantalizing prospect: "Could you be the one" (literally) that outlives your prognosis? It was hardly heartfelt, but his answer was "Yes." So off I didn't fly into the wild blue yonder. Instead, I shuffled out his office and with my head down, exited the building and staggered into my car where my wife, Dina and I attempted to process the information we had just been given. I don't recall there being much discussion during the 30-minute drive home or even after we had arrived. To tell you the truth, besides still processing the information we had just received, we were pretty much in a daze (hence the overall name for my columns: "Daze of My Life") and were so blindsided by the seriousness of what we had just heard (no cancer history in my immediate family as well as my being a lifelong non-smoker), we almost couldn't talk, probably didn't talk and any talking we did was likely empty and hollow. Imagine being told, out of the blue, that you could be dead in less that a year, maybe even before your 55th birthday. Heck, both my parents lived past 85. That's what I've been anticipating. To think that 30 years yet of my future life had just been taken away was almost too much to believe. But since the oncologist was not the least bit in doubt about any of the results or how to proceed (we didn't feel the need, given the urgency and conviction with which the oncologist spoke, to even get a second opinion), we decided and committed that very day to starting chemotherapy the following week. It seemed clear that there was absolutely no time like the present. Though the dozen or so tumors in my lungs "never acted" as my oncologist expected (growing and moving) it wasn't until Dec. '19 a year or so after a large tumor appeared below my Adam's apple that a new surgical biopsy was performed. The results of which indicated thyroid cancer, which a few weeks later led to my having a thyroidectomy (thyroid removed) per the direction of my newest doctor, an endocrinologist (who has been treating me ever since). When the post-surgical biopsy confirmed yet again the existence of thyroid cancer, my reclassification as a thyroid cancer patient was official. Soon thereafter, my treatment for thyroid cancer began, first an overnight at the hospital and then daily lenvima pills. As a result, I am no longer being treated for lung cancer, just thyroid. The question has raised its ugly head in these last few months: Was I misdiagnosed or did I have two types of cancer? And if I do have two types of cancer and one/the lung cancer is not being treated, am I in reality a "dead man walking"? Ignoring/not treating lung cancer is generally speaking, not advisable. As my oncologist said to me many years ago about my having lung cancer: "I can treat you but I can't cure you." Not exactly words to live by. It's on these anniversaries and the last few months leading up to them when I focus even more on my circumstances. How does that actually occur when my having cancer already consumes my conscience and subconscious? I can't really explain it other than to express the amazement and good fortune that I'm still alive. All I know is, I'm always happy when I wake up the next day and the anniversary has finally passed.
    2 points
  23. LCSC Blog

    "Medican't" Take It Anymore

    The non-stop - or, so it seems - television advertising letting all of us viewers know that the 2020 Medicare Open Enrollment window is about to slam shut is nearly over. For those of us age 65 or older, this is not an opportunity to ignore. And given the frequency and repetition (the commercials are repeated, rarely ever different), at least on the channels that I watch (maybe that's the problem?), I feel like Bill Murray reliving his previous 24 hours endlessly in the movie Groundhog Day. However, unlike the movie, I can't do anything to undo what is constantly bombarding me on television. Switching channels during the commercials wouldn't really help because usually I'm watching a specific program in between the commercials, and switching back and forth seems like too much effort. Besides, I might lose the continuity of the program I'm watching if I were to mis-time my switch. I suppose I could mute the commercial but I've heard Joe Namath and others talk about the "give back benefit," the "zero dollar premiums in your area," and the possible additional benefits: "vision including contacts, hearing aids and batteries, home-delivered meals, dental and rides to your doctor's appointment" so often that even if I couldn't hear Joe actually promoting, I would still hear what he's saying in my head since I've probably heard it already a hundred times since the enrollment period began. As I sit and write this on Tuesday, Dec. 1, the end is near, however: Dec. 7, 2020. On that day the senior-centric advertising party (solicitation) will be over. Then the commercials will cease and desist - for now, only to return next year in November when the 2021 Open Enrollment period begins anew. Perhaps I'll be more inclined to act then. After all, I am their target audience. However, my being a senior with a pre-existing condition (cancer) limits and complicates my options. In addition, changing plans means changing doctors and though change can often be a good thing, for me, considering my life occasionally hangs in the balance, change might not be a good thing. In fact, it could be a downright bad thing. I mean, my oncologist has kept me alive for almost 12 years since my Feb. 27, 2009 non-small cell lung cancer stage IV diagnosis. Granted, there may have been a slight revision of my diagnosis since three surgical biopsies performed earlier this year confirmed that what I actually have is papillary thyroid cancer. Nevertheless, changing now seems counterproductive, sort of. The damage is already done. I'm not sure there's much to gain now that a second opinion has similarly confirmed my updated diagnosis and has agreed with my current oncologist's treatment plan: Lenvima for me. But I do feel there's much to lose: nearly 12 years of treatment/experience with my present provider. And even though I understand that medical records can get transferred, I still feel I'd be putting myself at risk by forfeiting the knowledge that has been accumulated by the doctors who have been treating me/managing my care. I imagine it's typical that a patient's survival depends in part on their emotional and psychological make-up. And of course on the doctors and staff that have been responsible for their care. And though I am not unaware of the possible mistake/blip on my medical radar with respect to my actual diagnosis, I still feel that I should stay on the horse on which I rode in on, if you know what I mean? Switching plans would mean switching doctors, staffs, procedures, et cetera. And I'm just not sure if I'm emotionally (there's that word again) equipped to deal with such upheaval in my life/care. All of this being said - and sort of anticipated - listening to all those Medicare Open Enrollment commercials has made Kenny a very dull boy, and an aggravated one at that. I'm not sure I can take much more of it. Thankfully, mercilessly, the commercials will stop after Monday, Dec. 7. Although I think Joe did an excellent job promoting his cause, I'm afraid it's fallen on deaf ears. Now that I mention that, I wonder if my current provider offers hearing benefits.
    2 points
  24. LCSC Blog

    Scan Hardly Believe It

    Life goes on. My warranty has been extended for another 90 days as all three scans from Sept. 23rd indicated stable and/or no new metastases. News with which I am extremely fond of saying, I can live. Though the radiologist's report that I received lists both non-small cell lung cancer and papillary thyroid cancer as "the indication," my endocrinologist feels what I have is thyroid cancer and likely have always had thyroid cancer. I wish I could say that will be for the lawyers to argue, but peculiarities of law and the three-year statute of limitations in Maryland makes a final resolution unlikely. Therefore, I will continue to live with my amazing good fortune and possible misdiagnosis as part and parcel of how I roll. And how I roll, as you regular readers know is chemotherapy, targeted therapy, immunotherapy and targeted therapy once again - in that order, and diagnostic scans every three weeks in the beginning and eventually and presently, every three months. As such, over these nearly 13 years of being a cancer patient, I figure I've probably had at least 50 CT scans and another 20-plus MRIs, plus an occasional PET scan. The point being that over the years, I've done an awful lot of waiting for scan results with my life/immediate future hanging in the balance. And 'balance' is exactly what one needs to endure these incredibly anxious situations. Though I'm fairly experienced at this juncture, the actual moment of truth when I receive the email containing my results is oft-putting to say the least and downright heart-stopping to say the most. However, my personality is perfectly suited for these ongoing challenges. I never presume the worst. I never woe is me. I never bemoan systemic delays in communicating the results to me. As my close friend, John, would most definitely say: "It is what it is, and it will be what it will be." I never put the proverbial cart before the horse. I can take it. No problem. My wife, Dina, on the other hand, cannot. For her, the results cannot arrive soon enough. Granted, immediate feedback would be much preferred. But, that's never been the process. I can accept it. Dina, not so much. That being said, I will admit that after all these years/scans/waiting for results, I have become less able to take it all in stride. It's as if a layer of patience and understanding of the process has been worn away with time. Even though I've mostly received good news (unexpectedly given my original "13 month to two year" prognosis - in Feb., 2009), I have had my share of disappointing news. But on the whole, I've been one of the luckier cancer patients. Still, each scan I wait for results is hardly an adventure in wonderland. I am constantly wondering and worrying when the other shoe will drop (the bad news). In fact, opening up the email that contains my scan results literally takes my breath away. Not to be negative, which I'm not, but during the Team Lourie meeting in late Feb., 2009 when I first met my oncologist and were given all the medical reports/assessments of my recent X-Rays, CT scan, PET scan and surgical biopsy from the pulmonologist, thoracic surgeon, pathologist and internist, it was clear and convincing from all these doctors that I had lung cancer. And my prognosis? Grim, and it was no fairy tale. It was surreal to hear and nearly impossible to process. I have what? When I was told the survival statistics by my oncologist of stage IV non-small cell lung cancer patients (me): 2 percent survive beyond two years, my brother asked if there are exceptions. To which my oncologist replied to me: "Could you be the one? Sure." Little did I know that the doctor was being literal. One was the answer. Ever since I heard that, I felt my days were numbered. All these several years later, I'm not exactly counting days, but neither am I counting chickens. I live quarter to quarter and am grateful to do so.
    1 point
  25. 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.
    1 point
  26. Blog Entry is the Teamwork of both Michelle and Tom Gali: After receiving a lung cancer diagnosis, the last issue, one would expect is problems with health insurance. While it’s unusual to have a claim fully denied, delays that effect diagnostics or treatment are quite common. Here are my 10 tips for dealing with health insurance problems. 1. Get your companies Human Resources staff engaged. Find out who has responsibility for claim payment. If it’s the employer, then they are self-insured and typically have an insurance advocate to fight the battles on your behalf. Get them in the fight. If the health insurance company pays the claim, expect difficulty in authorization and payment. Read your policy about appeals. Every determination that denies or limits care can be appealed. For example, it’s possible to have a non-network provider paid at the in-network rates for a specialty physician. Be assertive, do not take the first “no”. Appeal, appeal and appeal again! 2. Realize each state has an office that regulates insurance. Find out their email address and provide copies of each claim to the office for “information and action as appropriate.” If you need them to act, they will have a ready record of your case on file. 3. Schedule a face to facemeeting with cancer provider’s financial team.Understand how they process insurance claim submittals. Who does what to whom and who is in charge. Get names, phone numbers and email addresses for key people in the claims department. Sometimes providers have a nurse who manages pre-certification requests. Get to know this nurse. Call or email this nurse first if insurance does not pre-approve a diagnostic or procedure. Insurance companies have definitive rules about receiving medical records. Sometimes the lack of a record becomes the log-jam. 4. Get to know the healthcare provider’s patient advocate.It’s important to establish a relationship with this office. They know how to work the health system bureaucracy. 5.Don’t accept “I’m waiting for a call back” as an answer.You will need to be assertive as the squeaky wheel gets the grease. Use a “five-why” response technique. Ask “why” the wait, then follow with another “why” question and another and so on. Provider or insurance company bureaucracy is their problem, not yours. You are paying for it to work efficiently. When it does not, they owe you and answer as to why not. 6. Do not sign any documents at the health system requesting foran “advance or estimated payment” until the insurance issues have been sorted out. Lung cancer treatment is expensive, you do not want to be on the financial hook for treatment that the insurance company is supposed to pay for as part of the benefit design. Sometimes there is a “step therapy” or pharmacy formulary requiring a treatment regimen be tried first. Step therapy can also be appealed through a “peer to peer” conversation with your doctor. 7. Create a log and document everything. When discussing your claim with an insurance company record everything. Record the claim number, date of service, date of claim, time of your telephone conversation and first and last name of each person you speak with. You may not actually be speaking to a member of the insurance company, but one of their “specialty care” vendors. It’s important to know who all the players are. Sometimes vendors do not follow the insurance company rules. 8. Ask the insurance company to assign a medical case manager. This is typically a nurse that can help navigate the health insurance system. Insurance companies often have free phone resources for cancer patients such as mental health counselors, dietitians and physical therapists. Find out what services are available since they are not typically advertised in benefit brochures. 9. Pay attention to your mail. You’ll soon receive a deluge of Explanation of Benefits (EOB) forms; they are all different and are confusing. Put someone in charge managing your EOBs. Create a log recording the date of treatment, the provider, the claim number, amount paid and amount denied. Read and understand the numeric codes explaining reasons for payment or denial. Sometimes, insurance will issue a “partial benefit” payment or apply financial penalties. This information is usually buried on the EOB. Do not pay any provider bills until the EOB has been received. Hospital billing errors are frequent. 10. Stay calm. Every problem has a solution. When discussing your problem and you get a techno-speak response, ask for a plain English explanation. Be ready to interrupt (it’s not rude if you don’t understand!) Save your energy for getting well.
    1 point
  27. LCSC Blog

    Time to Kill

    (Again, not a cancer column. Given the title, it would be a pretty gruesome reference to my life in the cancer world if it were.) No. Not even close to a cancer column. But I am writing about a similar mind-numbing experience. However, this experience has nothing to do with disease/dying. Instead, it has to do with the effort, patience and excruciating lack of success in attempting to contact, meaning speaking to an actual person, at the Internal Revenue Service and/or at the Social Security Administration. The phone numbers you're "googled" to call are the opposite of hot lines. They are frigid. Almost too cold to tolerate, but since your financial life expectancy may be at risk, somehow you have to hold on for dear life. Or else pay, or rather be unable to pay, the consequences. So I'm on hold for 14 minutes and counting, sort of. More like listening to some unrecognizable instrumental between looped messages that say (A) You're still on hold and (B) They haven't forgotten you and your call will be answered in the order in which it was received. (Actually, you're hoping they remember you.) Unfortunately, you have no choice but to hold on. The answers you seek are only found at these places/numbers and unless you go to the source, you'll be barking up the wrong tree and/or not squeaking the right wheel. I'm fairly certain that if you don't call them, they're unlikely to call - back, or forward, especially if the reason for my two calls is to secure money coming to me instead of negotiating how I'm planning to pay them. So sit tight and be brave - and be near a bathroom to make sure nature's call doesn't interrupt your interminable wait on hold and/or be sure there are enough bars on your phone so a draining battery doesn't end your pursuit. However, presuming the time it will take to speak to someone to be hours, not minutes, it can be an opportunity to while away your wait by multi-tasking and have the music offered up for your listening pleasure to serve as a kind of white noise as you go about some other personal business. In short, you can get things done rather than become increasingly frustrated that you're stuck by the phone accomplishing nothing. But you have to prepare and anticipate. This wait is not going to be a pleasurable experience. It's a means to an end, hopefully a rewarding one, but hardly one that's guaranteed. If you can only talk yourself into realizing how good you'll feel once this phone task is completed. Rolaids has nothing on the relief you'll feel when you're finished with this day's work (almost literally). Moreover, knowing you don't have to call them back tomorrow is nearly motivation enough. Crossing this task off your to-do list free's up not only time but mental space, as well. It's almost as if you've given your life back, at least for a few hours, anyway. As I sit and continue to write this column, it is 38 minutes since I began this exercise in time utilization. And it's just now happened, a representative from the Social Security Administration has just interrupted the music loop and offered their assistance. Let me get my bearings and organize my thoughts so I'm clear in what I'm saying. I don't want to have to make this call again. I already have once before. I have called previously and after telling my tale, was put on hold while the operator researched my claim only to be disconnected when the operator returned to address my question. But this time, there was no disconnect. I received my answer in a reasonably timely manner and off I now go into the rest of my day. Next up: the IRS. Do I dare test my limits and call them on the same day as I called Social Security or do I reward myself and take a well-deserved break? Either way, it's one down and one to go. I think I'll call tomorrow. I don't feel like testing my patience yet again, and besides, I'm finished with this real-time column.
    1 point
  28. LCSC Blog

    I'm the Big Winner

    (Not a cancer column.) For the past six months or so, I have been the email-recipient of $50 gift cards to numerous to count/tally. They have run the gamut from Ace Hardware to Zappos.com and everything in between like CVS, Kohls, Walmart; you name it. I have rarely clicked on any of these "giveaways" because the one time I did, the answers required on the site - to claim my winnings, seemed a bit intrusive, as in what they were asking was none of their business. If they truly want to incentivize me to spend money at their store/site, they need to leave my personal business out of their equation. You don't need to know my mother's maiden name or the name of the city where I was born, to give me money, and you definitely are not getting my credit card number into which you'll make "the transfer." I've been down that rabbit hole before, and it's not good. For a time, I was naively open and curious about these presumptive money/data grabs. I figured that in a pandemic world where millions of potential buyers are quarantining at home, and brick and mortar businesses are left fending for themselves, finding an alternate route to my wallet/credit cards while many of us were less inclined to go out and mix with the masses, a gift card teaser seemed prudent and reasonable. Moreover, given the very extenuating circumstances we've all endured these last 18 months, it was safe even; given our collective evolution in terms of purchasing goods and services online over the last decade to buy remotely. Throw in the same day service available with some vendors and there really is very little need to leave your house. But after being nearly hooked and gutted by a phishing expedition once before, I've become extremely cautious about taking any bait/ tipping my toe in the figurative computer water, especially when the offers seem to be pulling at my heart's strings: free/easy money. Certainly I am mindful of the advisory: "If it sounds too good to be true...", yelled from the highest mountain tops in the past decade. However, the fraudulent pursuit of our almighty dollars are not being sent by idiots/innocent target marketers. Hardly. These callers, with whom you eventually have to make verbal or online contact are quite proficient at answering your questions and/or allaying any fears that the about-to-be-extremely-unlucky mark is exhibiting. And once the caller/responder to your query has control of your computer - which you provided (it seemed like the logical thing to do to close/finalize the deal), the gift card party is officially over. The "free" money you had anticipated receiving is now going to cost you real money, as opposed to the offer you initially received which, as it happens, wasn't real/free at all. Still, even with my previous near-death financial wipeout, I did click on a CVS offer. The site had all the CVS bells and whistles and colors which I've come to recognize and the offer seemed genuine: three choices to click on a box to win a $50 gift card. And of course, it was the third and final red box on which I clicked that offered up my $50. That was easy. Too easy. As it soon became apparent, claiming the money was the problem. Once I answered a bunch of questions about my name, rank and serial number of where I live and so forth, I realized I was leading the caller down the garden path to my identity and all sorts of harrowing misadventures which I'd prefer not to experience first hand. Before it got too late/too personal on the sight, I politely backed out before any damage was done. As a result of this near calamity, I am no longer clicking on anything that seems the least bit enticing with unsolicited offers of direct payments/gift cards to me. If however, there are solicitations to me for gift cards to be mailed to my home without any preconditions or questions answered, I'd be happy to receive them. Otherwise, I won't bother. I've been shamed once, I can't afford, literally, to be shamed twice, then it is my fault (a fool and his money ...) .
    1 point
  29. LCSC Blog

    A Shot in the Arm

    Literally and figuratively. After a year or so living the pandemic life - staying at home/quarantining, wearing a mask, social distancing, washing my hands and watching the death toll from covid-19 top 500,000 in the United States alone - I recently became of the lucky ones to have been injected with a vaccine. I have to wait another two weeks to get my second shot. No worries. I have some protection now, but according to Dr. Fauci, the second/follow-up shot increases one's protection "tenfold." It wouldn't exactly be foolish to throw caution to the wind - and reintegrate back into society (depending upon where you live), but it seems premature and irresponsible to risk being stupid when in another two weeks, I could be smart. My wife, Dina, also recently shot, has been very smart all along, especially as it concerns my actual standing in the world. (Moreover, she has no plans to step out until she receives her second shot.) Belonging in the special co-morbidity group (presumably, a 66-year old with cancer/weakened immune system), I presented a very appealing target for the virus. I mean, my immune system is already compromised and with occasional breathing problems side effected by my thyroid cancer medication, I was potentially easy pickins. As such, Dina refused to give me passage out of our house. Victor Laszlow had a better chance of leaving Casablanca than I did of leaving Burtonsville. But soon it appears I will have my own "letters of transit." However, Dina has already informed me that I won't be returning to my former errand-running ways. She intends to continue ordering food online from the grocery store - and then drive to pick it up contact-less in their parking lot. Actually, I might be allowed to go that far since I'd be remaining in the car and still wearing a mask while popping the trunk and keeping my distance as the groceries are loaded into the boot. We'll see; we're still negotiating. But definitely not until I receive my second shot. In the interim, I imagine our lives will change very little. Thanks to the vaccine, though, there is hope that once again, I'll be able to interact with people, places and things. But return I shall and relieved I will be. However, having lung cancer, and/or thyroid cancer which has metastasized to the lungs, in the midst of a pandemic with a virus that often locates in the lungs and creates breathing/pulmonary problems - even with the two shots, is still as scary and risky as it gets, especially if you're of a certain age as I am. In two weeks, I'll have received my booster shot, and I'll have a lot less to worry about, thankfully. And for a cancer patient still undergoing treatment with a less than a "normal" life expectancy anticipated, being fully vaccinated is as good as it gets. And I suppose I can live with that, live being the operative word. Having cancer, irrespective of the type, your diagnosis/prognosis, is pretty damn difficult. It impacts every facet of your life. The thought (your reality) is never far from your conscious mind. And once you become a member of this less than exclusive club (more every day, unfortunately), a club that nobody wants to join, there are more risks to your life than you ever imagined, and many more for which you have absolutely no awareness. Having an external complication, like a virus, with variants that seem to spread rapidly, which have now infected infected over 30,000,000 Americans, and an infection for which there's no specific cure, and seems to have its greatest negative impact on people exactly like me (age and disease) is about as foreboding as it could possibly be. And with no place to hide, other than in your own home - with no visitors allowed, a precaution most recommended (to invoke the syntax of Hercule Poirot, "the greatest detective in the world") has made many of us impatient and perhaps a bit tense. I can, as many healthcare professionals have said, almost see the light. Hopefully, it will be July 4th of this year as the President has suggested and not July 4th of next year.
    1 point
  30. LCSC Blog

    "Clinical Correlation Suggested"

    Means what exactly? That was the suggestion written by the pathologist after "non-small cell lung cancer" was written in the "diagnosis" section of the pathology report completed after my original surgical biopsy was performed at Holy Cross Hospital in early 2009. I had never seen this document until this past week, finally retrieving it after nearly 12 years, represents a kind of symmetry. Though 2009 is when my life as an officially-diagnosed-lung-cancer patient began, I am not at all prepared to say that my current life as a lung cancer patient is over. It's just called something else. Nor am I prepared to say this document gives me much clarity or satisfaction for that matter. Unfortunately, getting re-diagnosed with papillary thyroid cancer recently doesn't change the past or guarantee the future. It does however, reshape it, potentially - for the better. When it comes to cancers you'd prefer to have and the ones you wouldn't, thyroid cancer, generally speaking, is way more preferable than lung cancer. The survivability gap is all you need to know. The side effects and sacrifices required to live with thyroid cancer pale in comparison to those required of lung cancer patients. In fact, if you don't already know it, lung cancer is the leading cause of death among all cancers, by far. Moreover, more people die from lung cancer as do from the next four cancers combined. Lung cancer is a killer. So being reclassified from lung cancer to thyroid cancer is huge. The fact that I've survived so long already, 12 years post-diagnosis, means I may have used up some of my unexpected life expectancy, however. Still, it beats the alternative. Originally, I was told my lung cancer was incurable and given a "13 month to two year" prognosis. Presently, as it relates to my current prognosis, it's sort of indefinite. The drug I'm taking is effective for three years. After which, I'm sort of on my own as there are no new drugs in the offing to manage my cancer. In effect, I am once again incurable, as the years of treatment for lung cancer had no effect on the underlying thyroid cancer and did a kind of damage that now means I can be treated but not cured. Quite different than had I been treated for thyroid cancer all along. Yet, seeing this paperwork from 12 years ago which clearly lists "non-small cell lung cancer, primary to the lung" has sort of stopped me in my tracks. So far as I understand/recall, there was no "clinical correlation." I started chemotherapy the following week. Was something neglected? Certainly, I didn't ask for a second opinion, which is on me, but was the oncologist supposed to research further? Was the pathology report sort of damning - me, with a kind of faint praise - uncertainty, if you can extrapolate? Otherwise, how does the profession account for my still being alive? When we got a second opinion a few months back from a head and neck (to include thyroid) cancer specialist at The Lombardi Cancer Center at Georgetown, she said, if I had lung cancer, I wouldn't still be alive so it's logical to presume the recent surgical biopsies that indicated thyroid cancer were likely confirming a long-standing cancer, and that quite probably I never had lung cancer but rather thyroid cancer that had metastasized to the lung. But there was no further investigation in 2009. The diagnosis - without a "clinical correlation" - was non-small cell lung cancer/carcinoma. At the initial meeting with my oncologist, it all sounded so serious and the doctor was so clear in his assessment of my situation, that it seemed irresponsible, foolish even, to wait. We scheduled my first chemotherapy infusion for the following week and the rest is history. Now I'm wondering if it was history that need not have been made.
    1 point
  31. 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.
    1 point
  32. Tom Galli

    Free and Invaluable

    Using the words free and invaluable to characterize lung cancer medical care is a hard sell. I’ve seen so many scams promising this, that, and the other thing that deliver nothing more than a money pit. So I was indeed skeptical when Dr. David S. Schrump introduced his National Cancer Institute Intramural cancer treatment program, at our April 2018 LUNGevity Summit, with the words “no cost to patients, including travel and lodging.” Why didn’t I know about this resource? I’ve encountered so many newly diagnosed folks who had no or inadequate insurance and who had to forgo treatment because of financial concerns. Yet, there is a sophisticated, taxpayer funded, medical system that designs “unique to patient” protocols including surgery, radiation, chemotherapy, and newly emerging treatments. And, it is free! All patients at the NIH are on investigational protocols, including those who are receiving standard care, so that their tumor tissues, blood, etc can be used to develop new cancer therapies. Once a patient is enrolled onto a protocol, care is provided at no cost. There is no third party billing, deductables, etc. Then on the second summit day, I learned Dr. Schrump’s Surgical Oncology Team is developing unique vaccine-like immunotherapies using tumor material surgically removed from a patient — a tailored and individualized immunotherapy agent. In an ongoing vaccine study, Dr. Schrump’s team observed immune responses to lung cancer-associated proteins in 60% of patients; several responders have had unusually prolonged disease free-survivals, supporting further evaluation of the vaccine. Dr. Schrump hopes that personalized vaccines may one day be an alternative to adjuvant or post-surgical chemotherapy, the current standard of care. Much more work needs to be done to determine to feasibility and potential efficacy of this approach. Moreover, they are using aerosol delivery methods as alternatives to IV or oral administered drugs to increase the uptake of drugs into lung cancer cells, and “prime” them for attack by the immune system. Indeed, his presentation was filled with very innovative methods of attacking lung cancer with promising results. If you are an American and don’t have the financial resources for lung cancer treatment or if your medical team has run out of treatment ideas, contact the National Cancer Institute. You don’t need a physician referral. Email [email protected], introduce yourself and your diagnosis stage and type and put your phone number in the email. Free and invaluable may indeed be words appropriate to use in concert with lung cancer treatment.
    1 point
  33. Tom Galli

    Hope Is A Good Thing

    Red, in white shirt and loose thin-black tie and sweating in Maine’s summer heat, is leaning on a rock-wall fence. He’s just opened Andy’s letter found under the black obsidian rock. In the background we hear Andy reading his evocative description of hope: “Remember Red, hope is a good thing, maybe the best of things and no good thing ever dies.” The movie Shawshank Redemption is a powerful story about hope and life with a message that should resonate with every lung cancer survivor. I watched the movie the other day and made the connection. Andy was imprisoned for two life sentences with no possibility of parole. He was wrongly convicted of murder and throughout the story of his day-to-day life in prison, everyone tells him “hope is a dangerous thing.” On escaping, Andy proclaims that hope is “maybe the best of things.” The movie story line is exactly parallel to the plight of the late-stage diagnosed lung cancer patient ⎯- an unforgiving disease with hope as the most effective means of avoiding consequences. For lung cancer, hope is not a medical remedy. While new lung cancer treatments are emerging more frequently now, basic research funding to diagnose and treat lung cancer lags other cancers. Perhaps the pace may pick up, one hopes. Perhaps a treatment may emerge just in time to save a life, one hopes. Perhaps a miracle remission occurs, one hopes. Hope may not be a medical remedy but, for many of us, it is our only effective medicament. And, in my case, hope is “maybe the best of things.” Recall the story line of Shawshank. Andy’s future is confinement in a mind numbing institution, but he makes a choice to live in a different reality and works diligently, every day, on a novel escape plan. He makes a conscious decision to live. He embraces the hope of escape against all odds. Andy’s poignant characterization about life reveals his reasoning: “I guess it comes down to a simple choice, really. Get busy living or get busy dying.” Exactly! Sometimes in the heat of lung cancer treatment, we forget its purpose ⎯- extended life. No one knows how long but life for most is extended. So what do we do with the extension? Re-read Andy’s characterization. We long for a period of life extending into satisfying old age. But most without lung cancer do not dwell on the amount remaining on account. Lung cancer patients take careful measure of the balance. But, measure for what end? I believe, if one chooses treatment, then one chooses life. Rather than dwell on the remaining balance, focus on doing something you enjoy everyday. I suggest a survivor forget the past, declare the future irrelevant, and live in the day. “Get busy living or get busy dying.” Stay the course.
    1 point
  34. ...So this is what the process is like trying to schedule a COVID-19 vaccination. If you're lucky though, you receive an email reminder - since you've pre-registered, advising you that the time to strike is now. You click on the link, and as I'm witnessing, you wait your turn. The site says there's "High Traffic," and they'll be with you momentarily. There's no calling. There's barely any responding. There's simply sitting and staring - and waiting. There's no indication of how long you'll be waiting. There's no guarantee that the site will even open. There's only instructions to refresh your computer every 30 seconds in the hopes that an interactive-type page will appear and you'll have reached the promised land: the page where you can actually schedule an appointment. However, as I'm sitting and waiting, I'm getting frustrated. I seem to be getting nowhere, slowly. Though I'm refreshing as directed, nothing is changing on the screen I'm staring at. I've linked but nothing is really linking. So I keep repeating myself: stare, refresh, wait; stare, refresh, wait. It's a loop of nothingness. It seems an endless pursuit. It's almost like whack-a-mole, except in your attempts to get connected, the process is excruciatingly slow and there's nothing to whack. (At least it hasn't cost me anything, other than time, that is.) I realize that the demand is way more than supply and according to experts, it won't be until June/July when "anyone who wants to get a shot will be able to get one." Nevertheless, I would have thought, given my comorbidity (cancer and age 66) that I'd be closer to the top than the bottom. Not that I'm particularly anxious about my circumstances, but my wife Dina is very concerned about them. (I'm staring steady at the site where this column began. As yet, despite my rigorous refreshing, I still haven't passed "Go.") I understand that patience is a virtue. But today, while staring at and refreshing this site and seeing no sign of life as we know it, I am testing that virtue beyond its stress points. This process reminds of the days of buying concert tickets online. It was nearly impossible, for a popular show, to break through the internet logjam. That is not until you received a message that all the tickets had been sold. How people ever got through, I'll never know. It was always befuddling to me. I know, however, with respect to concerts, sporting events and the like, there would be a secondary/aftermarket availability. I knew an alternative existed. I also knew the cost would be black market-ish, somewhat over the original retail. Unfortunately, or fortunately, public health solutions cannot be left to the market. In its effort not to discriminate and be fair to all recipients, we're stuck with the present communication and distribution system. Having endured these kinds of pursuits before when calling the IRS, Social Security, Medicare and The Veterans Administration, et cetera, I know a few precautions one should take before attempting to climb these mountains. First, clear your schedule. Next, go to the bathroom. Then, go to the kitchen and get some refreshments. Find someplace comfortable and cozy from which to call; you need to be prepared for the long haul. And finally, should another call come in while you're on hold, do not risk your spot in line by clicking on your call-waiting. Technology can sometimes break your spirit. My wait is over. The site was just refreshed. It says the center is closed. Perfect timing. I just finished the column.
    0 points
  35. Z-Jeanne

    anguish...

    mum has been ill for 11 months now. some hospitalisations, care at home. chemotherapy treatments. The doctor tells us that mum is ready to stop fighting. What a cowardly catch. He tells us to prepare ourselves for the hardest part. She is making her way. She is accepting the disease, and the fatality. Because the treatment will not be able to save her. It is the anguish.... we do as usual, we wait, the day when, mum will tell us "I don't want to fight anymore", "I'm tired, let me go".
    0 points
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