LouT

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

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.

Today marks 6 years since my diagnosis. In 6 years, I've had surgery, chemo, more surgery, thyroid cancer, more chemo, radiation and SBRT. But I have survived and (mostly) thrived. The path hasn't been easy and I have a number of side effects that are trying, but I'm here. At the end of the day, that's all that matters. 
Looking forward to next year's cancerversary!

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.

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.

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. 
 

(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.

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

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.

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 
 
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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.

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.

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.

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 
 
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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.

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.

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".

 

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.

As my brother, Richard, has often said: "If the oncologist is happy then I'm happy." Let me update that sentiment slightly: "If the endocrinologist is happy then I'm happy." And so we should all be happy. Yesterday, I had my post CT scan telephone appointment with my endocrinologist to discuss the previous day's lab work and the two days previous scan. She was "very encouraged." "News," as I told her, "with which I can live." And more than just the words she spoke, it's the manner in which she spoke them. Her tone was positive, uplifting; she was very pleased. I could almost see her smiling. After hearing it all, she didn't need to tell me to have a nice weekend. I was well on my way. Oddly enough, I have learned to take good news in stride. It's the bad news that has a tendency to knock me off my gait.
Prior to this Friday morning call, I had received, electronically, as I usually do, the automated releases of both my lab work and the radiologist's report. Having been down this road for nearly 12 years now, I am not unaware of discouraging results. The words I read and the numbers I see always tell a story. And even though I'm somewhat experienced, the interpretation and meaning of it all doesn't automatically jump out at me. Oh sure, I'm familiar enough and certainly know what lab results (levels) generally speaking are problematic (creatinine and bilirubin particularly). But there's so much more that I don't know. Moreover, there is no real breakdown-type summary to clarify beyond all my reasonable doubts as to what is happening in/to my body. I'm sort of left to my own devices. Devices which have proven to be unreliable - and certainly ones not very educated on the matter at hand. If this were about baseball, I wouldn't be clueless at all. But it's cancer and science and medicine; all the subjects I know very little about.
Released automatically, I receive the same document that the doctors do. That means what I'm reading is the actual report, written by a doctor for a doctor. The report is full of medical jargon. And though there are "impressions," provided as well as an organ-by-organ characterization, until I speak with one of my doctors and have them review the report with me, I'm never quite sure if what I think I understand is wishful thinking or whether my worst nightmare is happening during the day.
As a result, there are lots of words and medical assessments that are lost on me. It's not like reading a baseball box score when I know what everything means and its significance. Sure, there are many familiar words, but there are more that are not. Obviously "no new sites of metastatic disease I can understand and appreciate, literally. But "aortic athersclerotic calcification" and intrathoracic and axillary lymphadenopathy" I don't. Understand them? I can barely pronounce them, let alone spell them. And as much information is provided in these reports, I feel as if I need a scorecard to identify all the players and determine what it all means.
Now when I have that follow-up phone call with the endocrinologist/oncologist, the report is explained. However, the explanations are not chapter and verse, they are more like sentence and paragraph. They're short and hopefully, as it was time, sweet. Of course, I could ask more questions but as the comedian Dennis Miller once joked on the radio: "I don't care how the popcorn is popped, I just want it to pop." So too am I less concerned with the popping (details). I want to know if I'm going to live or die. Unfortunately, the reports - and the conversations don't really offer a glimpse into the future as much as they attempt to clarify the present - which apparently is as good as it is likely to get. If 11 years - and nine months as a cancer patient has taught me anything, it has taught me to be grateful for any good news, however indeterminate.

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.

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.

A lady with lung cancer passed early this morning. I knew her well. She survived two surgeries claiming a lung, radiation, and many many infusions of chemotherapy. Indeed, her disease was being treated like diabetes or heart disease — a chronic but controlled condition.
Lung cancer did not claim her and death is not a celebratory event, but living a full and meaningful life despite lung cancer is indeed praiseworthy. In characterizing the lady’s life, full and meaningful are an enormous understatement.
In recalling our years together, I am struck by how few times we talked about lung cancer.  We shared a disease but talked about stock shows, cars, fashion, movies, politics, family, travel, ranching, tomatoes, and friends. That she would not achieve NED didn’t bother her a bit. “I’ve got things to do and doing nothing ain’t gonna happen!” 
I will morn her passing.  I will also strive to emulate her lifestyle.
Stay the course.

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.

We are "locked and loaded" for our fifth Transatlantic cruise since I was diagnosed with lung cancer. This Sunday, we depart from Ft. Lauderdale and fifteen leisurely pamper-filled days later, arrive in Southampton, England. Along the voyage, we'll visit Bermuda (a first), the Azores (an other first), Lisbon (been there), Bilbao, Spain (a first), and Le Harve, France (been there). And best of all -- no jet lag! We are serious cruisers and are thrilled to cross the pond in a brand new ship (Celebrity Edge christened in Dec 2018). 
Once we arrive in Southampton, we'll pick up a rent-a-car and proceed to get lost driving on the wrong side of the road as we explore England's picturesque Cotswalds region. We really do love getting lost in countries where we can almost understand the language! Then, after a week of land touring, we fly back home to usher in our summer.
Vacations are important for everyone; they are vital for lung cancer survivors.  I find I need about 7 days of state change that removes me from day-to-day life and stress. On the eight day, I float in a mental sea of serenity and on this trip, I do hope for calm seas throughout our voyage.   
Stay the course...we will!
Tom