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BridgetO

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  1. Like
    BridgetO reacted to Tom Galli for a blog entry, Twenty Years of Life   
    Twenty years ago, on this date, I was handed a surprise diagnosis of lung cancer in an emergency room. The X-ray showed a very large tumor in my right lung that perfectly explained hemoptysis, the reason for my ER visit. My GP admitted me for a diagnostic work-up, and I spent 4-days inhaling albuterol while being scanned, poked, and prodded.
    In the hospital, I met my medical oncologist and pulmonologist who told me I had about a 7 x 2.5 cm tumor filling the main stem bronchus of my right lung. The tumor was bulging into my airway causing vigorous coughing and complicating an unsuccessful flexible bronchoscope biopsy. Several drama-filled weeks later, my thoracic surgeon performed a biopsy to reveal squamous cell carcinoma. Unusually, no lymph nodes were involved. Staging was complicated; no lymph node involvement suggested IIIA but size pointed to IIIB.
    There were few resources in those days explaining lines of treatment or prognosis.  The American Cancer Society suggested smoking cessation as a treatment method. Dr. Google revealed I might have 6 months of remaining life.
    Treatment started with chemoradiation to shrink the tumor and allow a pneumonectomy and ended with precision radiation to fry a reluctant tumor camping in my left lung (metastasis after surgery). I had 4 recurrences and 5 lines of treatment before achieving no evidence of disease (NED) in March 2007. My medical oncologist deemed me cured of lung cancer in March 2021 and then retired from practice.
    What have I learned? Medical statistics predicting remaining life by stage and type of lung cancer are imprecise and inaccurate, even today. Why? Listen to this elegant essay “The Median isn’t the Message” by Professor Stephen J. Gould that kindled the first ray of hope for a good outcome.
    Depression does not improve by ignoring symptoms. Thankfully, doctors who treat lung cancer today are assessing for depression and referring to professionals. Expect to be depressed and cooperate with treatment.
    Faith and hope matter and I believe they influence outcomes. I am a man of religious faith, but faith is an innately human trait. Religion is not required to believe treatments not seen are working to combat lung cancer, and faith fosters hope, and “hope is a good thing and good things never die.”
    Finally, consider that if I can live, so can you!
    Stay the course.
    Tom
  2. Like
    BridgetO reacted to laurie2020 for a blog entry, Going forward   
    I was diagnosed with 4th stage cancer metastisized at size 7 with 2 blood clots all in my left lung and lymph nodes. I was loaded with fluid at time of diagnosing believing I had pneumonia and learning my real diagnosis. I went into emergency surgury for a perichondrial window to keep the fluid building up around my heart and had over 4 cups of liquid drained out of my back that was surrounding my lungs. This was a little over 2 years ago. My oncologist refused t give me a time that my life may expire and for that I thank him everyday. A few months ago he told me my time expected was 3 to 6 months and that others e had diagnosed with 4th stage Lung cancer had passed long ago and I am considered ever so lucky. Before I left the hospital 2 years ago I placedy life in God's hands and refused to google lung cancer. I did not want Google telling me how and what I needed to feel and fill my head with the fear of what to expect. I chose treatment and continue to attend every 3 weeks. I tell myself that I will live my life until God decides otherwise. I prepared my will, move to a smaller house and have sent these years making family monies and helping them prepare for my passing by letting them know that I am not afraid and they will move forward when I pass. I was forced to come to terms with reality the day I was diagnosed by myself in 2 separate hospitals due to Covid. All of this made me see that I wanted to move forward having a quality of life not a life of fear. Stay strong and off of Google.
  3. Sad
    BridgetO reacted to Tom Galli for a blog entry, A New Chapter   
    Perhaps you've noticed. My activity on this treasured Forum has declined. Folks have inquired. I've been hesitant to respond; perhaps my faith and hope that things might be different caused a lack of candor. I'm nearing 20 years of surviving Stage IIIB diagnosed, Stage IV progressed squamous cell non-small cell lung cancer. Longevity after diagnosis in my day is a miracle. Thankfully it is much more commonplace today.
    No, I don't have a lung cancer recurrence. I'm cancer-free as far as I know. My annual oncology consult with low-dose CT is in September but I'm not concerned. My daily trial is pain. I've had chronic pain from taxol (burning toes sometimes called taxol toes) and a constant throbbing at my open thoracotomy incision site. Eighteen taxol infusions have left their mark; three open thoracotomies in the span of 7 months are the painful surgical side effects. Now nearing 73 years of life, 2 Army injuries have joined my parade: herniated disks in my neck and lower back. Moreover, muscle cramping, another taxol-induced problem causing low magnesium in my bloodstream, is worsening. I'm not sleeping, at least not having restful sleep. And yes, my physicians have tried every sleep remedy. My GP is still trying.
    In a recent consult with my GP, he advised that I not seek surgical care for my herniated disks. He is concerned about my pulmonary insufficiency, and I'm waiting for my pulmonologist's view. Of course, the orthopedic surgeon counsels little risk. But surgeons are surgeons. My neck and back may be correctable, but I might not survive the surgery. My GP also wants me to ask the pulmonologist about O2, 24/7. I'm currently using O2 at night (attempting to sleep), but 24/7 tethered to a leash would be a new chapter in my life. 
    I check the Forum every day and thankfully we have a team of folks who welcome and provide meaningful suggestions and support. I'll be in the wings cheering all on from the sideline. As always...
    Stay the course.
    Tom
     
  4. Like
    BridgetO reacted to Tom Galli for a blog entry, The Stigma   
    "You have lung cancer. You don't belong here. You gave the disease to yourself!" Those words represent an admonishment bordering on scorn that greeted my first and only in-person cancer support group session. It was fortunately small, populated by ladies, all who had breast cancer. 
    I smoked; my entire family smoked. I also served as a career US Army officer. I spent months breathing oil fire smoke during the First Gulf War; have instant olfactory recognition of "burn barrel smoke" so prevalent in Army encampments; and lived 9 years in places with high radon gas concentration. I am the only one in my family with lung cancer. Might environmental exposure be my cause?
    We are entangled in a culture of blame. Devastation is not bad enough; we are compelled to make it worse by blaming. Then we shame! We do it over and over. To what end? What is solved? Here is one very sad casualty. Many who join our Forum these days are never smokers. Yet they are instantly branded by The Stigma! It starts early. Almost the first question asked by their medical team is: did you smoke? How does the answer change treatment or outcomes?
    There is another causality. Blame is a blocker to low-dose CT screening participation, particularly in the US veteran community. Who, after honorable service, wants to submit to a CT scan when the outcome leads to scorn? The chance of doing nothing appears preferable to the limelight of diagnosis.
    Even language used to characterize scan eligibility is blame-tinged. Who wants to admit to being a “20-pack year” smoker? No wonder less than 10% of the eligible population actually agree to a low dose scan. One must sign a piece of paper certifying smoking history, and that dresses the stage for blame and shame!
    We need to be done with this!
    Stay the course.
  5. Like
    BridgetO reacted to Tom Galli for a blog entry, Contributors to cure   
    From February 2004 to March 2021 I was a lung cancer patient. That is 17 years to reach the pinnacle outcome for our disease--cure! When I think of the people who did the heavy lifting but three rise to the top: wife Martha, oncology nurse Heather Belle, and oncologist Victor Horadam. Only these 3 were with me through every twist of my wild treatment ride. These are my contributors to cure.
    Long suffering wife is a wholly inadequate term for describing Martha's burden. I'm not an easy going guy; quite the opposite I can be intense, dictatorial, and completely convinced that my opinion is the only right one. To say that Martha tamed the raging bull is an understatement, in the extreme. Some suggest that spousal support comes with the "for better or worse" territory. But, consider Martha married me during my failed third-line treatment. Where was spousal duty at diagnosis, first, and second line? No, Martha's role cannot be explained by anything other than love. Our relationship was strained by treatment but love is unrestrained and unconditional. So are belief and conviction. Martha's strength of conviction that I would prevail was a mighty bolster against my slim odds. Her conviction saw me through long after I'd given up hope.
    Why is it that nurses seldom get the star billing for their important role in medicine? Physicians get all the glory but only diagnose and prescribe; nurses treat. In medical oncology we see our nurse every treatment. By contrast, in 18 weeks of a typical chemo cycle, we might see our physician at the midpoint and end of treatment. Nurses also answer the phone or return emails and text and portal messages telling us how to deal with a side effect or in my case to "calm my raging sea of anguish." While my oncologist retired from practice just after pronouncing me cured, Heather soldiers on, day-in and day-out, dealing with a score of patients each day in active treatment. Heather Belle and thousands like her are the bedrock component of our medical oncology system. Do we understand that? Do we appreciate it? Do we thank them? Thank you Heather!
    By virtue of modern medicine and recent advances cancer treatment, including lung cancer, is largely a "cook book" affair. Presenting with a stage and type, a physician will turn to the national standard of care for first and second-line treatments. When these fail and for many of us with lung cancer, they do; the physician needs to create a treatment strategy. The best physicians are applied scientists. They are current with science, understand theory, and use both along with insight to devise a treatment when the cook book runs dry. Insight is Victor Horadam's discriminating trait that produced my cure after 5 lines of treatment. If insight so important, how do we recognize it in our physicians? What are the indicators? What can we look for?
    Let's examine Victor's methods to understand how he acquired insight. Before seeing us, Victor spent time in his office reviewing my medical file, scan, blood work, and current treatment. He had perhaps a hundred active patients and as a general oncologist, he treated most forms of cancer. I believe, he used this period of quiet contemplation to focus on my disease.  Then at the beginning of each session was the pro forma question "how are you doing?" He listened to our answer and took notes on points we made. Then he examined me, using a stethoscope to listen to my breathing and heart. He checked my pulse at my feet. He felt lymph nodes in my neck, lower throat and arm pit. Next he consulted the latest scan or test result. He explained what the scan meant avoiding jargon. Finely, he described possible next steps explaining the benefits and risks of each. This examination process never varied during my 17 years of consultations! Process discipline, I believe, allowed Victor to form insight into what might work. Consider that insight defined is "the capacity to gain an accurate and deep intuitive understanding of a person or thing." I was the person and my lung cancer was the thing. What are physician behaviors that allowed Victor to acquire insight?
    Taking time to reacquaint, listen, examine, explain test results, and delineate possible next steps along with upside and downside of each all combined to generate insight. I believe insight comes from Victor's unique consultation process discipline. 
    This forum is a special place where people with lung cancer can share their experience. When people learn of my treatment history, they ask me how did it happen. Here is how. I have a wife who loves me and whose conviction never waned. I had an oncology nurse who had the endurance of Job, was diligent in administering treatment, and was responsive to my needs. I had an intuitive physician whose process discipline yielded time and opportunity to find a way to eliminate my lung cancer. These are my contributors to cure.
    Stay the course.
     
     

  6. Like
    BridgetO reacted to LilyMir for a blog entry, Facts are stubborn things, but statistics are pliable   
    This is a blog about lung cancer survival statistics
    One of the first instincts that kicks in for almost all of us who have been devastated with a (lung) cancer diagnosis is to ask how long have we left to live. Any web search for survival rates returns dismal statistics and it is hard not to panic or at least get quite demoralized. When I told friends about my recent incidental diagnosis, one of them responded with utter shock but added “oh listen, my sister was given 3 months but lived 4 years” (I believe her sister had breast cancer). I am sure she meant well and was basing her comment on what Googling lung cancer survival returns so was trying to make me feel better. I was stunned and did not know how to react to her comment about being given 3 months etc, after all my kid is 6 years old and as much as me living any day now is a blessing, 4 years is still a horrifically short time for a 49 year old mom to have left with her family.
    With my initial panic and despair easing a bit now, a month after my lobectomy, and 2 months after that nodule was captured in an incidental scan, I started reading a bit more about lung cancer, including statistics. In this post, I will try to parse what some of the survival statistics and their differences. If you simply want a summary and no detail, you can stop reading here and jump to the summary!
    I wondered about the subtle but important differences in survival rate definitions after reading a blog post by our forum’s Tom Galli about lung cancer statistics. Tom happened to mention that the cause of death was not factored into the commonly cited survival rates. That assertion very much surprised me since, at least for lung cancer, the average age of diagnosis is around 70 so there is likely to be quite a bit competing causes of death that I would have expected survival statistics to take into account: e.g., did the lung cancer patient also have heart disease and died of a heart attack? vascular disease and died of a stroke? This  prompted me to take a deeper look into what exactly is being reported as survival rates. Before getting into some of those, a disclaimer that all 5- and 10-year survival statistics for lung cancer are (by definition) out of date so do not reflect the reality of the last few years. This is very important since lung cancer treatment has dramatically changed/improved over the last few years. Therefore, as you read some of the material cited below, keep in mind that these numbers are OLD and thus may not be as relevant to us patients living with lung cancer in 2022.
    Different cancer survival statistics exist [Ref. 1] . Some are best suited for research and policy while other are better for prognosis and clinical decision making. For simplicity, I will list 3 such measures:
    Overall survival: Ratio of (the number of lung cancer patients who remain alive 5 years after diagnosis) to (the number of lung cancer patients). Some also call this the all-cause survival, observed survival or crude survival. Relative survival: Ratio of (the overall survival of lung cancer patients) to (the overall survival for similar but cancer-free population, matched by age, sex and race). Cause-specific survival: Ratio of (the number of lung cancer patients who are not dead from their lung cancer 5 years after diagnosis) to (the number of lung cancer patients). I had assumed 3 (cause-specific survival) is what is always being quoted in statistics but quickly learned that this is not the case. In fact some report 1 (overall survival) though most report 2 (relative survival) but almost no one reports 3 (cause-specific survival).
    Relative survival can be overestimated, e.g., when a healthy screened effect exists, as was demonstrated in the Prostate, Lung, Colorectal, and Ovarian (PLCO) Cancer Screening Trial, where participants in this screening trial had 30%–50% lower mortality rates for heart disease, injury, and kidney disease than expected.
    Relative survival can also be underestimated, e.g., smoker lung cancer patients typically have lower life expectancy than the general population because they have higher risks of death from many other cancers, as well as from heart disease.
    For prognosis, one would need a survival measure of the net effect of a lung cancer diagnosis, in other words, the chance of surviving assuming the lung cancer was the only possible cause of death. This is very hard to measure. Cause of death is often not accurately captured. Even if it was, the question is, will that matter much in terms of end result? Turns out the answer is not quite simple: It may matter for some cancers but not much for other cancers. A Nature paper studied this very question by including competing causes of death and reporting the 10-year cause-specific vs. relative survival for lung, breast, prostate, ovary, oesophagus and colorectal cancers [Ref. 2]. I highlight a few findings from this study:
    Though relative survival is usually preferable to use, for some cancers (like lung and prostate cancer), relative survival is inaccurate. For cancers of the lung, relative survival was lower than cause-specific survival. In fact, for all cancers except breast and prostate, relative survival was lower than cause-specific with particularly large differences observed for lung cancer, ovarian cancer and colorectal cancer. For lung cancer, when the population hazard was inflated for smoking, survival estimates were increased (since smoking is a strong confounder for survival from all causes). Error between the 2 survival measures vary for lung cancer, say for 45-54 year olds, cause-specific survival was 25% higher than relative survival. Note that this was not stratified for stage etc so hard to really use for personal prognosis. Solutions to such error/discrepancy may include adding other demographic variables than age and sex, and to stratify relative survival calculation by cause of death. Summary:
    Currently cited lung cancer survival numbers are outdated. They do not include the years that saw dramatic improvements in how lung cancer has been more effectively treated with new therapies. Relative survival rate is commonly reported. These statistics do not take into account for actual cause of death. For lung cancer, this was shown to lower actual survival rate measures below what they really are. With the above caveats, if you still want to check/consider/use available (old) survival numbers, make sure to at least look at statistics relevant to you, e.g., find the rates related to your own age, stage, sex, cancer sub-type, smoking history etc. Lung cancer is still terrible and has much worse survival by any measure than say breast cancer but we are individuals so medians and means do not represent us as individual patients. Currently little is known as to where we are on the patient distribution curve, are we to the left or the right of the mean, by how much, we don't know yet. I personally found this SEER Explorer App useful (SEER is the Surveillance, Epidemiology, and End Results Program, which provides information on cancer statistics) [Ref. 3]. You can look up some stratified numbers, including 5-year survival and conditional survival (conditioned on the patient having already survived 0, 1, 3, or 5 years since the cancer diagnosis). Remember, even there, the numbers are old (covering years 2012-2018) and some criteria is missing, say smoking history.
    Tom ends his messages with: stay the course.
    I am ending my blog with: don’t live as a statistic (admittedly, I am still trying to abide by that).
     
    [Ref. 1] . https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4829054/
    [Ref. 2]. https://www.nature.com/articles/s41416-020-0739-4
    [Ref. 3]. https://seer.cancer.gov/statistics-network/explorer/application.html?site=612&data_type=4&graph_type=5&compareBy=age_range&chk_age_range_122=122&series=9&sex=1&race=2&stage=105&advopt_precision=1&advopt_show_ci=on&advopt_display=2 
  7. Like
    BridgetO reacted to Tom Galli for a blog entry, LexieCat, Esquire Rests Her Case   
    LexieCat joined us on June 29, 2017 after taking advantage of low-dose CT screening for folks at risk for lung cancer. That test revealed a small highly suspicious single nodule that was surgically removed. She had a successful lobectomy; we all hoped she was one and done.
    Lexie, a screen name for Teri Garvey, was a district attorney in Camden, NJ. In my younger years, Camden, across the Delaware River from Philly, where I lived, was an industrious town bustling with shipbuilding, soup making (the Campbells Soup Company), distilling, and iron working. The deindustrialization of America hit Camden hard and when the jobs left, crime moved in. Camden, now a hard-edged town, made enforcing the law a dangerous occupation. But Teri was a tough lady, fearless, courageous, and dedicated to justice.
    We met in person during the 2018 LUNGevity Summit. She a lawyer, master of words and ideals, and I the engineer, entrenched in physics and things, discovered a fond friendship. Summits are our “shining city upon a hill”. Surviving lung cancer is a mighty forcing function. Our bond of survival transcends differences.
    Teri became a bastion of support for our forum. A witty quip-master, her parody of new drug names was quintessential Garvey—“…it makes me think of Buzz Lightyear: “To Imfinzi and beyond.” On starting combination chemo with immunotherapy, she offered: “My motto, walk softly and carry a big drug.” After a clean scan report a member, knowing of her broken collar bone, suggested she not do a happy dance. Teri responded: “Sadly, you know me all too well. [My] Childhood nickname—‘Princess Grace.’”
    Nearly 3 years after surgery, a scan showed tumors in her lung and sacrum. Her second-line treatment in September 2020 was combination chemo (carboplatin, Altima and Keytruda). Scans in April 2021 showed progression. She decided to join the arduous and risky Ivoance Tumor Infiltrating Lymphocytes (TIL) trial which ended early for her after 5 of 6 scheduled infusions. A good news scan was joyfully celebrated in July but by October, cancer cells were found while draining a pericardial effusion. Her defenses down from the TIL trial, Teri struggled to return to good health. She experienced a series of exhausting hospitalizations from October though the New Year that sapped her energy but not her fortitude. Cancer was beating her body not her spirit. In a private message, she sent me this photo with the quip: “I finally love my hair!” Teri chose hospice care on February 19, 2022. She passed surrounded by loved ones on February 25th.
    Teri was one of those very special people I’ve met on my life’s journey. Like so many, her diagnosis was a surprise. Her attitude after diagnosis is one to emulate. Teri told me lung cancer would not change her. She lived every minute of every day caring for people, seeking justice for victims, and helping the unfortunate. She told me she chose the risky TIL trial because it might help someone down the road. It might indeed.
    Stay the course.

  8. Like
    BridgetO reacted to Tom Galli for a blog entry, 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
  9. Like
    BridgetO reacted to Tom Galli for a blog entry, 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
  10. Like
    BridgetO reacted to Roz for a blog entry, 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.”

     
  11. Like
    BridgetO reacted to Susan Cornett for a blog entry, 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.
  12. Sad
    BridgetO reacted to LCSC Blog for a blog entry, Not That I Don't Understand But...   
    ...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.
  13. Like
    BridgetO reacted to Tom Galli for a blog entry, A Day of Thanks   
    It is a beautiful Thanksgiving Day in Texas. Amid COVID mayhem we are suffering, Mother Nature decided to intervene and give us this gorgeous day to remind me about the important things in life.
    I've been blessed in so many ways since my surprise lung cancer diagnosis in February 2004. I married the love of my life, walked my daughter down the aisle, experience the birth of my granddaughter, enjoyed glorious vacations, and perhaps most important found meaning and purpose for life after lung cancer. What is this meaning? 
    I've learned that yesterday is irrelevant, tomorrow is unimportant, only today matters. I can truly have a new life with each new day. Life is finding joy, and then relishing the moment. When I find my little piece of joy, I celebrate. I stitch together joyful moments as memories. I write about them. When life gets difficult, I review my joyful record. I am uplifted and fulfilled.
    Today I give thanks for the thousands of survivors on this Forum who teach me about life after lung cancer. The accumulated wisdom is an instruction manual for life. The most fundamental instruction: live in the day, find joy, and then celebrate. The montage shares a tiny fraction of joyful moments in nearly 17 years of life after lung cancer.
    Stay the course.
    Tom

  14. Like
    BridgetO reacted to Lisa Haines for a blog entry, 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.
  15. Like
    BridgetO reacted to Susan Cornett for a blog entry, 4 years!   
    Today marks 4 years of survival! By most standards, my path hasn't been as difficult as others. There have definitely been highs - when my hair grew back, my lashes grew in longer  - and lows - two recurrences and a secondary cancer diagnosis. But as I say often - I'M STILL HERE! I tell my story to anyone who will listen. People need to know that lung cancer doesn't have to be an automatic death sentence. Does it suck? Yes. Will it change your life? Definitely. But you move forward, one step at a time. Forward is forward ,no matter the speed.
    I am looking forward to the Breathe Deep Denton event in April. I enjoy visiting with the other survivors and bringing attention to this cause. I've also been asked to speak at a function in March so I'll be sharing my story again. The more the public understands lung cancer and all of its causes, the better our funding will be for research. 
    Most importantly, though, is this: I stumbled across this site one night when I was looking for answers. I have met wonderful friends - in person and online - here. Those friends have made this journey easier. Thank you, all. 
  16. Like
    BridgetO reacted to LCSC Blog for a blog entry, Medicare Is In The House   
    More like in my wallet. After worrying for the past 18 months about possibly losing my health insurance, I finally hit pay dirt - and it didn't hit back. I have received my Medicare card and after I "dissenroll" from my interim "Obama Care" within the next week or so, I will officially join the ranks of the millions who have insured their health - so to speak - with the Federal Government. No more will I ifs, ands, or buts about hospitals, doctors ("medical" actually) and prescription drugs (parts "A", "B" and "D" for those of you unfamiliar with the alphabet soup). Dental and vision coverage I'm not so sure about, but at present, I can live with the coverage that I know I have now because the worst case scenarios have been addressed. And as a former insurance broker, solving and/or protecting against worst case scenarios was always my main concern. To invoke "Speedy" from those long-ago Alka Seltzer commercials: "Plop, Plop, Fizz, Fizz. Oh, what a relief it is." And even though I'm not plopping or fizzing, I am effervescent nonetheless at my arrival.
    Reaching milestones (even destinations, sort of) is a way I've measured and evaluated my cancer experience. Not that I keep a chart or even a calendar with Xs marking the days but "I've looked at life from both sides now" (heck, I've looked at life from all sides now and in between, too) and my glass is still half full. I remain positive about my negative and despite having never having seen Joni Mitchell in concert (although I did have tickets to see her at Cole Field House in the 70s; once on stage, however, she realized she was too sick to perform and stage right she went. Occasionally, her songs have spoken to me.
    Right now, the United States Government is speaking to me in the form of a red, white, and blue card. They are telling me that I have made it to the promised land, a land whose existence was proposed in 1965 and which became law in 1966 fulfilling promises made to all Americans who reach age 65 that health insurance is their right and not because they were privileged. Nevertheless, I feel privileged to be "Medichere." For 10 years, 10 months and 20 days, dating back to late December 2008 when I first experienced the pain in my rib cage which precipitated my visit to the Emergency Room, I have been under the proverbial gun. Sometimes, it's been holstered. Other times, it's been locked and loaded. So far, no shots have been fired, even though occasionally I've been in very close range. I can't say for sure whether I thought I'd actually get here, but let's be realistic, we all had our doubts. But now it's time to gear up. A tremendous weight has been lifted from my shoulders. All I have to do now is live with the fact that I have stage IV, non-small cell lung cancer, an incurable disease if there ever was one. But here I am, alive and reasonably well.
    No more will I have to worry about who, what and where I'm going to be treated. From now on, I'm in charge (like Charles). As a result, I feel as if I've regained a little control of my life. And for a cancer patient originally diagnosed as "terminal," this control is an extraordinarily wonderful feeling. I wish I could bottle it like "Brighto:" "Brighto, Brighto, makes old bodies new. We'll sell a million bottles, woo, woo, woo, woo, woo, woo." (The Three Stooges in "Dizzy Doctors," 1937.) And that's just the kind of silly enthusiasm I'll need living forward. Hardly is the lung cancer I have on the run. I wouldn't even say I have it on the walk. A stagger, maybe. (Or maybe that's me who's staggering when I lose my balance because of the neuropathy in my feet.)
    Cancer is an adversary unlike any other. It's going to do what it does. I doubt Medicare is going to scare it into remission. Moreover, my not worrying about having health insurance anymore probably isn't going to have much effect on "the cancer" ("Forrest, Forrest Gump") either. The biggest effect will be on me, emotionally. I just hope that's enough. Because I'm going to need all the ammunition I can muster.
  17. Like
    BridgetO reacted to Tom Galli for a blog entry, Twice A Veteran   
    I’m an armed forces veteran. Also, a late stage diagnosed lung cancer survivor veteran. A smoker, I once had little doubt that smoking caused my lung cancer. Yet almost everyone in my immediate family smoked and none developed the disease. Could the unique hazards of armed forces training and warfare played a role in my disease? 
    Looking back, early in my career were demolition projects involving World War II era structures that were filled with asbestos. On deployment, burn pits predominated and everything was mixed with diesel fuel and burned in cut-down 55 gallon drums. As an engineer soldier, we trained extensively with demolitions and smoke and dust was a common exposure. I also directed fabrication of aluminum armored vehicles that included fumes and vapor from aluminum welding and superfine dust from machining. Lest I forget, there was the omnipresent smoke filled haze that lingered for months after Saddam decided to burn the Kuwait oil fields. I’ve inhaled a lot of stuff during the course of my Army career and maybe that played a role in the development of my lung cancer.
    Fortunately, there are new tools and programs for armed forces veterans that might help avoid a late-stage diagnosis.  The Veterans Administration has two important programs to early detect lung cancer: VA-PALS, a low dose CT screening program for at risk vets and the Gulf War Registry Health Exam for veterans. LUNGevity is adding its weight to support veterans. We’ve just established a Veterans Forum in the Lung Cancer Support Community that is now open as a support and information resource. A low dose CT scan is a good idea for those who served.
    Stay the course.
  18. Like
    BridgetO reacted to Rower Michelle for a blog entry, Managing Health Insurance Mayhem   
    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. 
     
  19. Like
    BridgetO reacted to DanielleP for a blog entry, Don’t Tell Me What to Do; HELP Me Do It! Or: If You Give a Caregiver a Cookie…   
    I know it’s happened to all of us at some point during our experience as caregivers: the “self-care” lecture. Eat a vegetable! Take a stroll! Get to the gym, even for fifteen minutes! Get a pedicure!
    And on, and on, and on…
    How do these conversations make you feel?
    I confess that they frustrated me immensely in the earliest days and weeks after my mom’s diagnosis. I was actively offended any time that someone had the audacity to suggest that anything was more important or more time-sensitive than navigating the maze of new information that we were tossed into. I just knew that anyone who could suggest I take time for frivolous activities was way out of touch with reality, and did not understand what I was up against. Worse: I had a feeling in my bones that they did not WANT to try and understand what I was up against. My family’s new normal was in conflict with the suggestor’s point of view on the world where everything was calm and copacetic and pedicures were still a possibility because there wasn’t too much else pressing.
    Long story short, my friends: I was a wreck anytime someone suggested I take care of myself first. Furious and righteously indignant.
    One of the most hurtful things I have ever taken to heart (perhaps unfairly, in retrospect) was an extended family member telling me to go get a manicure after I had texted her a photo of a cheap-but-cool new ring I had just bought while running errands. Her words cut me to the core. How dare she? After all, did she not know what was going on? Why did I deserve that amount of downtime, and how would I fit it in if I did, with all the stuff that needed doing? I was so close to saying “well, sure, if you want to fly here and relieve me for a couple hours!”
    Oh, hold on. Wait a minute. I just looked in a mirror. What’s this I see?
    I am STILL that person, still feeling those same feelings. They are hard to cast off, even four years after diagnosis, and even with our family somewhat regaining its sea legs and setting sail more confidently into the future than we did when lung cancer was new. I don’t feel this rage or umbrage as often anymore, especially since my parents themselves have been encouraging me to go and do and play and frolic, and I can honestly say I’ve had a few manicures since the “cruel” text. But, to this day, I definitely still build an immediate barrier between myself and any interloper who deigns to tell me to eat healthy and take more walks “because, after all, you can’t pour from an empty vessel.”
    (Ohhhh how the empty vessel analogy used to boil my blood!)
    I build the wall because something in my heart tells me that the person who would say those things does not understand me, my family, my parents’ illnesses, my priorities, my choices, or my daily schedule enough to be allowed to weigh in on what I do.
    Here’s my thinking: no adult is unaware of the need to eat more vegetables and take more strolls and get more sleep. Nobody in their right mind would deny that this is the ideal. But a serious diagnosis upsets every single ideal that a person and their loved ones have embraced and looked forward to. The anticipated and planned future of day to day or year to year fades away, and survival becomes moment to moment. Anyone who has been through it knows this intimately, and I can’t help but doubt the wisdom (not the good intentions, mind you, but the actual wisdom) of those who have not been through this minefield to understand the situation well enough to tell me to eat a vegetable and have it be sagely helpful to my needs. In fact, I recently told a good friend, a fellow caregiver, that “eat better and get more sleep” must have become society’s newest “bless you!,” because I’m hearing it given automatically after telling folks about my situation, just as automatically as they would bless me if I had sneezed.
    To put things more bluntly: anyone who has not experienced the particular choice of sacrifice for the sake of a loved one’s health/convenience/safety (etc) that a caregiver makes every day has no business telling me what to do, because they have no comprehension of the logistics of my day, and all that must fit inside it, and all the priorities that are NOT me or mine.
    Don’t get me wrong: I am not advocating for a lack of exercise, sleep, or vegetables. Do I even need to include that disclaimer? I don’t live under a rock and I wasn’t born last night. But that is precisely my point: we must appreciate the intelligence and common sense of caregivers enough to know that such vapid advice does not add information or value to the caregiver’s toolbox. Instead, we as caregivers must encourage more widespread awareness of our situations and all they entail and require, so that people who do have the desire and intention to help can contribute more meaningfully than by speaking platitudes.
    In other words: I frequently advise extended family and friends of cancer patients to refrain from instructing the caregiver, and to instead LEARN from the caregiver. Don’t tell a caregiver what to do. HELP the caregiver do what he needs to do. If you want him to have time to go fishing or get to the gym, then offer to cook a meal for his family. Better yet, just cook the meal and bring it over, without pressuring the afflicted family to socialize if they do not wish to.
    If you are trying to support a caregiver, and if you remember nothing else I say here, remember this: try and understand that checking things off the “to-do” list can often be the most satisfying “self-care” that there is. Don’t guilt me for not eating vegetables or not going to the coffee shop when that same thirty minutes could be used to do a chore that’s been bugging me for weeks. Please trust the person actually living in the situation to know what would de-stress the person the most. Do not insert your assumptions. In fact, feel free to ask how you can encourage the caregiver in completing that stressful task. Don’t automatically resort to the incentives system you might use with a child (“hey, let’s get ice cream if you finish that paperwork by noon!”), but ask the caregiver in a meaningful way what support structure he or she needs in order to knock it out (and, hey, it might just be ice cream—the point is to not assume, and not to place yourself in a position of authority).  
    If you are a caregiver, and if you remember nothing else I say here, remember this: encourage those in your life (who honestly want to help) to think of a concrete skill they have or task they could fit into their own busy schedules, and offer them the advice that it would be lovely if they could use that favor as testament to their sincere intent to contribute to the team. Demonstrate that this is the way you could be given the extra thirty minutes in your day for rejuvenation. Empower and enfranchise yourself, caregiver friends: there truly are gems among your networks who want to assist you, but they’ve been given bad information by multiple sources and industries, so they don’t know any better when they suggest that extra piece of broccoli. Nobody is an expert in your situation except you. Nobody is an expert in your loved one’s experience except your loved one. You two should be the instructors, and everyone else in your circles should be the instructed.
    If I had thought of that earlier, it may have saved me months of anguish and isolation when dealing with friends and extended family members, because I would have broken my assumption that they did not care to “get” it, and I would have filled my toolbox with helpful resources (in the form of helping hands) much more quickly than I did. Come to think of it, I also should have divorced myself long ago from the notion that someone must fully understand my situation before helping me, but that’s a story for another time.
  20. Like
    BridgetO reacted to Susan Cornett for a blog entry, Taking a page from Tom's book   
    Today I celebrate three years of survival! I am so happy to have found this community of people.  You all make this journey so much better.

  21. Like
    BridgetO reacted to DanielleP for a blog entry, The Pivot   
    “You know, I heard that green tea/apricot pits/jogging/apple cider vinegar/kale/broccoli/mustard greens/fresh avocados/yoga/this miracle powder/oil/salve/etc., etc., etc. will cure your mom’s cancer. You really need to try it. It worked for my cousin’s friend’s stepmom’s brother. Let me get you the information!”
    If you have ever had a loved one with cancer, you’ve heard these offers.  You know exactly how they sound. The personal heroism of a friend or neighbor or acquaintance or coworker, offered bravely to your face, can feel so affrontive and offensive. This is especially true when medical treatment plans are not working; when your loved one is especially vulnerable for any number of emotional or physical reasons; or—
    wait for it—
    when the person offering the miracle cure is otherwise uninterested, uninvolved, and/or unhelpful in the actual caregiving of the patient.
    There. I said it. Do not come up to me offering miracles, period. I don’t have the energy to explain to you that, while broccoli is great and we should all definitely get more exercise, they alone are not going to abate the tumors in my mom’s lungs. I don’t have the emotional wherewithal to be polite to you while staring in disbelief that you yourself have fallen victim to believing some scheme.
    And if you have not asked if we need anything, or brought us a cake or pie or casserole or loaf of bread in the four years since she’s been diagnosed, then you have an especially low level of credence or gravitas with me in terms of your interest in my mom’s well-being.
    If you are a caregiver, you know exactly what I mean. We are on the same page right now. We are all preachers and choirs (or pots and kettles) at once.
    But…that doesn’t mean we know what to do about these offers of help. As annoyed or hurt or exhausted as we may be, the fact remains that these are relationships we may need to maintain. Telling folks exactly how we think or feel about their unhelpful “help,” using all the words we want to use, is not exactly conducive to maintaining the relationships. So, we need a coping mechanism. We need a tool.
    At some point, off the cuff, in one of my more emotionally raw moments, when faced with one of these offers, I let slip from my mouth: “you know what would actually be helpful?”
    And, just as if in a sitcom, I jumped; surprised at my own words; time slowed to a crawl; I turned my head; I looked at my acquaintance, as if in molasses-slow-motion, terrified that she would be offended; and…
    She wasn’t!
    She looked right back at me, unaware of my sitcom-terror-moment, and said “what? What do you need? Let me help!”
    And my world shifted from a sitcom to a Disney princess movie. Time sped back up, birds chirped, the sun came out, the clouds parted, and music started to play.
    Well, that’s how it felt, anyway. Seriously: I was floored. Her genuine interest in helping had been proven, and I realized: she just didn’t know HOW to help, or WHAT to offer, so she had reverted to the only tip/trick/hack that she knew of on the topic.
    My point is: as caregivers, we are so consumed by all that we have to do that we cannot imagine anyone in our lives or networks being oblivious to our reality. But, my friends, they are. All of our friends (and relatives and acquaintances and neighbors and coworkers) are understandably consumed by their own realities. When they occasionally can fall out of their own orbits to see what we are up against, it takes a lot of time to catch up with the status of things, let alone to study up on what we might need or not need. This is time that the folks in our networks usually don’t have, my friends. So, if they are aware of some one-size-fits-all grab-and-go panacea, of course that’s what they’re going to offer. These are, after all, unfortunately readily available and highly advertised.
    Here’s the point: on that day that the skies cleared and my friend stopped in her tracks to ask what I actually needed, I learned that her heart was in the right place. Her intentions were good, even if ill-informed. And, I would venture to guess, that's the case 9x/10.
    And so, the “pivot” was born. This became my tool, and I offer it to you here in hopes that you can make use of it as well.
    (If you're a fan of the movie or musical "Legally Blonde," or if you love "Clueless" or "Mean Girls" or anything like that, this can alternatively be referred to as the "bend and snap." Don't ask).
    The “pivot” is just the name I give to my blatant usury of the assumed good intentions of the poor soul who offers me snake oil. Here is the script:
    Person: “I’m sorry to hear about your mom’s lung cancer. Have you tried making a smoothie from donkey fur? I hear that cures cancer.”
    Me: “OH my gosh, thank you, that’s so nice of you to tell me. Hey, ya know, I’m really covered up on Thursday. Can you bring mom some lunch?”
    BOOM. Done. Weapon deployed.
    (The caveat, of course, is that you have to have a ready-made mental list of assistance that would be useful to you. Frankly, I think this is always good to have, so that you can always respond productively when folks ask what they can do, no matter how they actually ask the question).
    Anyway: my favorite part of using the pivot tool?
    You will *very quickly* separate the wheat from the chaff. You will immediately be able to gauge whether the person offering the unhelpful help was actually interested in helping, or only being unhelpful after all.
    And, at the end of the day, they might actually come through.
  22. Like
    BridgetO reacted to Tom Galli for a blog entry, 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. 
  23. Like
    BridgetO reacted to Tom Galli for a blog entry, My Thoracic Surgeon Comes to Dinner   
    I've survived a lot of medical treatment. The most sophisticated and creative was while in the care of an extraordinarily gifted, courageous and talented surgeon. We invited him and his wife to dinner to renew our acquaintance and review the bidding.  The dinner was memorable.
    I could launch into the details of my 8 surgical procedures performed by this brilliant man but that story is told elsewhere. Of more interest to this community is what are the indicators of brilliance in a surgeon?  Unlike general medicine or oncology, surgical encounter time is brief.  One can ask about reputation, but thoracic procedures are risky and outcomes are variable involving heart, lungs, vessels, transplants and a myriad of complex procedures to the engine compartment of the body.  Using my surgeon as a model, it might be useful to develop a means test of thoracic surgical competence that a survivor might use to evaluate suitability during the span of a short pre-surgical consultation.  Here is my list.
    Is your surgeon friendly?  Is this man or women one you’d enjoy having a coffee or a beer with?  Does conversation flow easily?  Does the surgeon respond to your elements of conversation?  Does he or she listen?  Do other practitioners or office staff enjoy being around him?  A surgeon that is pleasant is likely to be a surgeon that is sympathetic, benevolent and a true believer of the tenants of the Hippocratic Oath. Is your surgeon inquisitive? Surgery is a melding of art and science. The art is “what” to do and the science is “how” to do it. Thoracic surgeons are a small tribe that practice in a complex environment. When something new is discovered, your surgeon should be very interested in investigating it for application. If your surgeon already thinks all the “what” questions are answered, find another. Is your surgeon respectful? In your pre-surgical consultation, you ought to feel like the important one. Your medical condition needs to be acknowledged as important and your feelings, fear, anxiety, and uncertainty should to be taken into account.  If your surgeon doesn’t use your name or look at you or attempt to help you relax during the consultation, find another.  If your surgeon makes a grand entrance, surrounded by a posse of assistants, and talks to them about your case, find another quickly! Is your surgeon decisive? At the pre-surgical consult, there is one key decision to be made: operate or do not operate.  This ought to be made then and there. If your surgeon feels the need to discuss your case with others, find another.  There is so much uncertainty in lung cancer surgery and each encounter will require a decision. Your surgeon needs to come equipped for making decisions, alone. Is your surgeon acutely intelligent? Compose a non-surgical question on the surgeon's interest or hobbies ahead of the consultation. Listen for passion and detail that indicates sincere interest and evidence of accomplishment. Intelligence starts with curiosity and leads to ability to assimilate knowledge and use it in cross functional ways.  A surgeon with a photography interest would know depth of field (the f-stop setting on a camera) is analogous to layers in skin, tissue structure, and visual focus precision.  Photography concepts relate to surgery yet it is a diverse field of intellectual pursuit. Avoid those who are interested only in surgery or who say they don’t have time for anything in their life but surgery.     We had a wonderful reunion made even more special by the attendance of my daughter, son-in-law and granddaughter.  My daughter met my surgeon 15 years ago while I was near death. She is also a beneficiary of his skills.  Ten years after my surgeries, I asked my surgeon to help find a skilled brain surgeon to remove my daughter’s complex meningioma. He moved heaven and earth to do so. Add compassion to my list.
    Stay the course. 
  24. Like
    BridgetO reacted to Tom Galli for a blog entry, 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 jan.pappas@nih.gov, 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.
  25. Like
    BridgetO reacted to Tom Galli for a blog entry, The Cadence of Scan Days   
    "Count-off...One, Two...Count-off...Three, Four...Bring it on down now...One, Two, Three, Four, One-Two...Three-Four!" 
    My life is filled with counting.  As a young soldier on the march, we counted cadence to stay in step.  The rhythm of the cadence was an elixir to the mile-upon-mile-upon-mile of forced march in full combat load.  They always scheduled the forced march on the hottest day, or the wettest day, or the coldest day of the year.  One memorable march was the day after a hurricane!  Weather or not, we marched and counted.
    After diagnosis with lung cancer, my life embraced a different sort of cadence.  There was the countdown to scan day, then time stopped waiting for results.  One...what time is it...just ten in the morning...the clock battery is out...is it back...how bad...how many nodules...how big...ten-oh-two...mets in the bones...liver also...scan tech didn't smile...he saw something...ohGod....  Life just stopped waiting for results.  Time stopped!
    Waiting for scan results is absolute misery coupled with measured doses of agony and anguish, torment, despondency and gloom thrown in for good measure!  Each day was a twenty-five-mile forced march that started but never ended.  Cancer sucks but waiting for scan results sucks squared! 
    Stay the course.
     

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