Sillycat1957 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.
Sillycat1957 reacted to LCSC Blog for a blog entry, Still Waiting for "Canswers"
As I half expected, with my oncologist out on vacation this week, he and the endocrinologist didn't speak. As a result, after sitting in the examining chair, the first question the doctor asks is, "So you have thyroid cancer?" I snickered and said something like "Hopefully," before I began to elaborate. Though she had access to my medical records, I can't say she was prepped and ready for our appointment. As she listened to my story, I could she see was simultaneously trying to review my medical history on her computer. In fact, as I hemmed and hawed in response to some of her medical questions, I kept saying/pointing to her computer for her to get the proper answer.
Nevertheless, eventually we were able to move forward in the determination of exactly what kind of cancer I have: thyroid cancer or lung cancer - or both (it's possible, she said). To that end-result, the doctor performed a biopsy on my "Adam's Apple" tumor, as I call it. The biopsy I had two weeks prior was from a lymph node. The results from which caused my oncologist to call me with his "exciting news." Apparently, those results were not enough for the endocrinologist (who had never seen me before) to make a definitive judgment, so in her office, that day, this second biopsy was performed. Fine with me since a second biopsy from a different tumor is absolutely moving the ball forward, as it is so often said these days; I just hope it leads to a touchdown instead of another possible fumble.
For the last nearly 11 years, I've been diagnosed with non-small cell lung cancer, stage IV. Now after two biopsies, not so much. Right now, the assessment of my cancer status is somewhere between a definite maybe and a confirmed I don't know. Will I now know - in another week's time (when the results of this most recent biopsy are confirmed) - whether my non small cell lung cancer is actually thyroid cancer or will there be additional biopsies, additional diagnostic scans, injections of isotopes, etc., to make a once-and-for-all confirmation of what the heck is going on (or has been going on) in my body? If so, it's been a long time coming. I first went to the emergency room Jan. 1, 2009 so it's sort of an anniversary of sorts as I write this column. I'd just as soon we get it right this time, if in fact it was ever wrong.
I have a few questions, some of which were answered by the endocrinologist. Yes, I can have two types of cancer. Could my lung cancer have changed to become thyroid cancer? No. And the underlying curiosity/question: During this cancer life that I have lived, I have been told, and seen multiple times on discharge-type paperwork I've received, that I have "metastatic cancer" meaning that the cancer has moved. Moreover, when one considers the staging aspect, my cancer was stage IV. Stage IV means, among "relevancies" (like inoperable), that the cancer has moved from its "primary " location. I remember asking my oncologist where did my lung cancer come from (I'm a lifelong non-smoker with no cancer history in my immediate family). His answer, if I recall correctly, and I may not due to "chemo brain," a confirmed side effect of chemotherapy, was that he didn't know, and if I further recall correctly, he wasn't particularly interested in finding out and accordingly no additional tests were ordered. Perhaps we misunderstand the need to know now or misunderstood the answers we were given then (Feb., 2009). But as of this past Friday, Team Lourie is sort of wondering as was the endocrinologist.
As of this moment, our focus is on hearing back from the endocrinologist. With the New Year's holiday/truncated week ahead, I expect we'll hear sometime during the first week of January. Until then, we'll try to move forward. What's done is done and we'll hear back when we hear back. I have what I have (and have had what I've had) and right now, all we can do is wait.
That being said, we are having a little difficulty restraining ourselves. We can't get past the fact that my oncologist called us in the first place, and in the last place, if he wasn't so sure, why call us and get our collective hope sky high? Why go out on such a presumptive limb? In spite of that call, somehow, we have to internalize and compartmentalize and try to synthesize fact from fiction. So far, it's proving extremely difficult.
Sillycat1957 reacted to LCSC Blog for a blog entry, An Idiot Servant No More
Given the extremely sad experience I shared with you all in last week's column: "Chino Lourie, Rest in Peace," this column will be an attempt to bounce back to my usual and customary reality, one oddly enough that has nothing to do with cancer (well, much, anyway). Instead it has to do with unexpected joy.
The joy to which I refer has to do with a subject which typically provides me little joy: I refer to our two automobiles, a 2000 Honda Accord and a 2018 Audi A4. The former inherited from my parents, payment-free but rarely hassle-free, the latter not free of payments, unfortunately, but free of hassle since its maintenance is covered by the warranty.
Nevertheless, for the past few years, off and mostly on, both cars have had an indication that all was not right. Each had illuminated dashboard warning lights (aka "idiot lights"), constantly reminding the driver that attention to some detail was required. For the Honda, it was twofold, a "Main't Req" light and a "Brake" light " were dashing." For the Audi, it was "onefold," an icon which looks like an upside down horseshoe, sort of, which I learned, after thumbing through the owner's manual, meant low tire pressure, appeared directly under the speedometer. Since I felt no give or take with the Honda and saw no evidence of low tire anything with the Audi, I learned to take their reminders in stride and figured I'd wait until their respective next service calls to respond to them.
Those service calls have now occurred. And I am extremely glad and relieved to say that their necessary/underlying repairs have been made. Glad/relieved not so much because the repairs/obvious safety issues have been addressed. Rather, glad/relieved that in making those repairs, the dashboard warning lights are no longer illuminating their disdain with the idiot behind the wheel: me, neglecting them.
No more, after starting either car, will my initial focus be on the dashboard to see if miraculously the warning lights have disappeared and finally stopped their incessant, non-verbal badgering. No more will I be forced to ignore their illumination and attempt to compartmentalize their visual reminders that all is not well under the hood (so to speak). And finally, no more will I have to worry that one day - or night, the other mechanical shoe will drop and I or my wife will be left stranded on the road somewhere waiting for a tow truck to drag us to our car-repair maker.
And though this dashboard-warning-light-turn-off is really a turn-on, I am still able to keep its effect in perspective. It's not a cure for cancer and neither it is a cure for my "stable" issue as written about multiple times recently ("Please Relief Me" and "Apparently, Not a Stable Genius"). However, as we say in sales: "I'll take a yes;" as they say on the high seas: "Any port in a storm;" and has been said for the last century: "Don't look a gift horse in the mouth." For the official record, I am not horsing around in the least when I say how thrilled I am now that every time I start our cars, I see no lights reminding me what an idiot I've been. As a cancer patient, I don't need that kind (or any other kind, quite frankly) of negativity in my life, or in my car either. Eliminating it from my activities of daily living adds a bounce to my step and a joie to my vivre.
I realize I may be over stating the significance of this momentous occasion, but when cancer takes over your life, it does so emotionally before it does so physically. As such, finding relief is HUGE. Moreover, solving a problem, however insignificant in the scheme of things it appears to be, provides the building blocks of success that, as a cancer patient, help strengthen your foundation as you navigate your daily routine. A routine which is already filled with enough challenges. So yes, I am going to make a mountain out of a molehill. And I am going to fill myself up with as much positivity, nonsensical or otherwise, as possible.
I need to be pulled forward, not dragged backward.
Sillycat1957 reacted to LCSC Blog for a blog entry, False Sense of Security
I never want to look a gift-oncologist in the mouth or take a "stable"-type CT scan with a grain of salt, however; self-preservation is a funny instinct. It can change from day to day (heck, even hour to hour) and dominate your pre-occupation or intrude your thinking not at all. You can rationalize away the good, bad or indifferent (results) or irrationalize away the less-than-expected or the more-than-anticipated. Results from lab work and/or diagnostic scans are the axis on which your entire life revolves. You either roll with the punches or you get knocked down by them. For a cancer patient, the punches often keep coming.
The punches thrown in my direction occur bi-weekly when I have my pre-immunotherapy lab work for my every other Friday 30-minute opdivo infusion. (Although the actual lab work and even the infusion is more of a jab.) The left hook/right cross combination occurs quarterly. That's when I slide through the computerized tomography scan and wait for results (as I had been for most of the last week). Since I have generally been asymptomatic - other than for miscellaneous side effects from the various medicines with which I've been infused - the tale of the tape, to continue the boxing references, happens when my oncologist emails the radiologist's report to me with a brief sentence summary: "a little worse" (this time), "stable," or something less discouraging that needs to be discussed at our next face-to-face appointment which generally is scheduled a week or so after the previous week's scan.
Regardless of what these mostly cryptic emails have said, until I hear exactly what my oncologist says, I am neither too high or too low. Granted, hearing "stable" is extremely encouraging whereas "a little worse," not so much. Nevertheless, the fight goes on. Cancer treatment is a series of actions and reactions (punches and counter punches, you might even say) so depending on how one's body reacts, determines what action is recommended. I am living proof, literally. Over my nearly 11 years of treatment, I have been infused with upwards of a dozen medicines. Once one treatment loses its luster, we change to another, hoping it will be more effective, and so on. It's science, not arithmetic. As such, any guarantees left the building with Elvis.
Being a cancer patient is not for everybody. One has to make the most of the least. It's easy to let the hard facts make you soft. Unless you find a way to be up, the cancer will take you down. Somehow, even when it's doing the worst to you, you have to be at your best. Being positive generates positivity in return. When I look at people, I try to smile so that they'll smile back (I'm being selfish, really). Do you remember George Costanza describing the look of disappointment on his mother's face when he told her he wanted to play the accordion? Like that, only the complete opposite.
When I interact with people, I don't want them feel "poor, poor, pitiful me" to quote Warren Zevon from his song first sung in 1976. And I don't want them to see cancer either. I want them to see everything about me. I may be diagnosed with a terminal form of cancer: stage IV, non-small cell lung cancer, but I don't want to be defined by it. Just because I'm living with cancer doesn't mean it's who I am. It's what I have, that's all.
And what reminds most me that I have cancer and what challenges my reactions to it more than anything, is when I have these quarterly CT scans (and the annual MRI, too). As much as I try to fend off the possible effect on my mortality (my true sense of insecurity), I'd be lying if I said I was always successful. In truth, I'm always worried about it. How could I not be? I guess I'm not quite ready to throw in the towel. I suppose that means, regardless of what my oncologist says at our next meeting, I'm still ready to live and fight another day.
Sillycat1957 reacted to LCSC Blog for a blog entry, Lost in the Shuffle
As difficult as the last few weeks have been, with Chino's at-home hospice-type care and ultimate passing and the "Catch-22 A" realities of "reverse-mortgaging" my house "perplexed" by the "derelicht" stable/shed on my property, my upcoming quarterly CT scan hasn't even "blipped" the radar. Though it will have occurred already by the time this column prints, it's quite possible, due to the Thanksgiving holiday, its results won't be known for much longer, 12 days in fact, than has been customary. And so far, between my wife, Dina and I, none of this has even been discussed. Yet, as I sit and write on Sunday, the scan is on Wednesday, three days away. Close enough to where it should have been front and center instead of where it's been: back and off to the side.
But so what, really? My attitude is, and has always been, to quote John, a close friend: "It is what it is, and it will be what it will be." By the time I slide forth and back under the CT scan's arch, or earlier I imagine, the damage to my body such as it is - or isn't, will have been done. Either the cancer has grown/spread or it hasn't. Certainly hearing and/or reading results from the oncologist will confirm facts at present not in evidence, but there is, without being particularly negative about my circumstances, an inevitability to it. One day, my amazing nearly 11-year run is going to come to a walk and eventually to a lie down. And I will deal with it when the time/results come. In the interim however, this next scan is merely another stop on the less-than Merry Go 'Round.
I don't mean to make light of an extremely heavy burden that us cancer patients have to carry: the prospect of death. As Lee J. Cobb said in The Exorcist: "I only mention it in passing." Cancer causes enough internal problems (physically), one doesn't need, if possible (and so far for me, it has been possible) to cause external (emotional) problems as well. Maybe it's a kind of resignation or some kind of accommodation or acceptance of reality that has enabled this one to have lived so long beyond my original "13 month to two-year" prognosis (offered up on Feb. 27, 2009), an accomplishment I am proud to say occasionally has led to my oncologist showing me off to his medical students; his prize cow, I call myself.
Honestly, what's the point, really? I'm only in control of so much. Focusing on things I can't control seems a waste of time and energy. Life is precious. Why dwell on things beyond my reach? Grasping at straws, if you can even find one, is likewise counter-productive. And setting oneself up for failure or disappointment is counter-intuitive almost. Why do that? The cancer is already causing enough havoc in your body. Don't let it affect your mind too. "Piling on," as the NFL referees used to call this major infraction. Now I believe its called "Unnecessary Roughness." For cancer patients, doing anything, physically or emotionally to hasten your demise/adversely affect your quality of life is most definitely unnecessary roughness and should be penalized.
Learning to live with what ails you seems a more prudent plan than "woeing" is me or bemoaning the process. Sure, we'd all love to be on the President's plan where you're examined in the morning, scanned in the afternoon and operated on in the evening. But none of us are on the plan and wishing we were, to quote Jean Luc Picard from "Star Trek: Next Generation," is not going to "Make it so." But I can live with that. I have lived with that for almost 11 years now and counting. I'll learn the results from my scan soon enough. Good or bad, life goes on. To quote my friend John's daughter, Melanie: "Whatever."
Sillycat1957 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.
Sillycat1957 reacted to LCSC Blog for a blog entry, Maturation
When I heard this word used recently, twice, I thought it was one of my father's made-up words like "surgerize" and "confliction" risen from his memory to finally enter the world of Merriam-Webster. And so they have, sort of. Apparently, "maturation" is a word some doctors use to answer any and all questions asked by patients inquiring as to why something or other health-wise is happening to them. In short, "maturation" means wear and tear. If Mick Mulvaney were the doctor, he might have said: "It happens all the time. Get over it!" Fortunately, he wasn't. Rather, he is the acting White House Chief of Staff, a man who likewise may be asking his doctor a few questions. The answers to which will likely not be "maturation." "What were you thinking?" might be first and foremost.
For a cancer patient (yours truly) who has survived above and beyond the call of his oncologist's original prognosis, "maturation" - to quote Boston Red Sox television announcer and Hall of Famer, Dennis Eckersley - "Is a beautiful thing." Diagnosed at age 54 and a half when all bodily functions were "performing within normal parameters" - to quote Commander Data from "Star Trek: Next Generation" - thinking I'd outlive my original prognosis from late February, 2009, and have senior-type moments 10-plus years later, was unrealistic, if I were to interpret my oncologist's rather grim demeanor. Yet here I am, Medicare card in wallet and still writing cancer columns as if cancer was only an astrological sign rather than the dreaded and feared disease, that it is. However, having cancer doesn't mean that I don't experience similar aches and pains as the rest of you. It simply means "Other than that, Mrs. Lincoln, how was the play?" A sarcastic reference to the fact that other things are still occurring, despite the obvious. Cancer doesn't preclude other older age medical realities from rearing their predictable ugly head: gray hair, bone loss, muscle weakness, memory loss, to name a few; it just complicates them and, in so doing, confuses you.
It complicates them by ignoring them for fear that they are cancer-related and thus life-threatening and visiting a doctor would merely confirm your worst fear: dying/death, an upside down version of what you don't know not hurting you. And by neglecting to see a doctor, the symptoms (for me, it was a pain in my upper left arm/shoulder which turned out to be a rotator cuff problem) become worse and more severe than otherwise would have become if you simply went to the doctor in the first place, and you end up suffering needlessly because it's actually not cancer, it's "maturation.'' So you're confused like "Bob's Big Boy" used to be: You don't know whether to stay or go.
When you're diagnosed with a "terminal" disease," you want to live, but it's extremely difficult not to think about dying. It dominates your brain and preoccupies your mind. Old age and living a full retirement become signposts in the distance that you can never quite read. And since you can never quite read them, you're not really prepared for what they say. Some of what they say or infer is that you're going to be visiting doctors more regularly than you ever have, and it's not necessarily all bad. It's merely a sign of your times which are now changing and you're living beyond a certain age, unexpected as it may have initially been suggested. As such, maintenance will be required to keep the older body and brain functioning. Ignoring symptoms, as my doctors have made clear to me, is NOT GOOD. Neither is assuming that such and such or so and so is good, bad or indifferent. It is what it is and It may be something or it may be nothing. Presuming facts and feelings which are not yet in evidence is a bit like putting the cart in front of the horse.
I know I'm afraid of dying. What these more recent pains and subsequent visits to the doctors have also shown me is that I can't be afraid of living.
Sillycat1957 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.
Sillycat1957 reacted to LCSC Blog for a blog entry, Apparently, Not a Stable Genius
Let me get this out of my system because until I do, I won't be able to write about anything else. Not to worry. This is not a cancer column. I am fine until they tell me otherwise which occurs every eight weeks after my bi-monthly CT scan tells the tale of the tape.
No, this column is about my lack of understanding and business acumen which twice has led me down the garden path only to be asked to leave before I got to smell any of the pretty flowers. Once (twice, actually) had to do with attempts at refinancing this old house (carbon dated to approximately 1750, according to a plaque the previous owner hung to the right of the front door), and most recently (also twice) to do with reverse-mortgage financing this same now older house.
With respect to the attempts at refinancing, I will make this short and not particularly sweet. Without getting into the lead paint, bathrooms, roof, door and window issues, it always perplexed me that if I could afford to pay $1800 per month at 6.75% interest, I could probably afford to pay $1400 per month at 3.75% interest. However, and this is where my lack of common banking sense manifests itself; my presumptive inability to pay $400 less per month was problematic for the lenders to be. And an over 800 credit rating did nothing to dissuade the lender's notion that whatever financial wherewithal I had exhibited over the previous 30-plus years was irrelevant borrowing forward.
As concerns the current issue: the reverse mortgage. To say my financial life depends on its approval might be a bit of an exaggeration, but not if you're in my shoes, even occasionally. I can understand the need for the installation of safety rails on the left and right side of the staircase going down to the basement. And grudgingly, I can understand the need for the structural integrity fix relating to the five wooden pillars sitting atop the cracked concrete slab which floors our front porch and apparently prevents the house from falling forward. But I can't understand why the old stable matters so much to the appraiser/underwriter.
It is not used or functional in any way other than as a repository for junk and as a landing spot/vantage point for the Turkey Vultures who nest there. This building is approximately 50 yards from our house and 10 to 15 yards from our neighbor's house. If it fell, like our barn did years ago, it would land on part of our two acres. Given its age, likely over 100 years, it was not, nor has it ever been, covered by our home owner's insurance. "Too old," they said. The structural engineer who submitted the report about our house did a-walk-around the stable with me and made note of its peculiar structural fixes which included cinder blocks and some rocks. However, in response to my "What do I do?" question; his answer: "We don't certify the structural integrity of 100-year-old buildings." Now I'm being told by my reverse-mortgage banker that I have to fix/secure the foundation of the stable or else the deal is likely dead. Dead over an out-building that nobody uses and was likely built before two century's turned?
The whole point of this application was to spend nothing and get something. It was not to spend something and get nothing. This stable, either structurally sound or not, provides me nothing as a living benefit. We're not moving into it. Nor are we selling the property. We're here for the duration. The stable, if it matters at all, will matter to whomever sifts through our financial remains, and since we have no children, those 'remains' are not really our concern. Yet according to the most recent email I received, either I make it my concern or stew in my own juices and slowly wither away.
When I began this process, I had hoped there would be an end in sight. I didn't realize it would be my own.
Sillycat1957 reacted to LaurenH for a blog entry, The Long Road Ahead: Garth Atchley (Part 2 of 2)
Facing a lung cancer diagnosis changes a person’s perspective about what matters in life and what doesn’t. Being diagnosed with cancer makes you put absolutely everything else to the side, or totally out of mind. You have the chance to let back in only the things that really matter back into your conscious mind. If you can do that, and spend more time focusing on things that really matter in the present moment, you will have completely changed and improved your mind and your life. I still get caught up in feeling anxious or scared about what might happen in the future and the negative impact it could have on my family, especially my wife and daughters. What’s helped me has been to realize that they are thoughts – they don’t have a physical presence anywhere and if you observe them but don’t chase after them, they go away.
If I could give advice to someone newly diagnosed, I’d probably want to say a few things.
1. Slow down. Information is going to be coming at you really fast and it can be overwhelming, especially with the internet making everything move at hyper speed. Take your time to digest what’s out there in terms of treatment options, support systems, heavy medical information, etc.
2. Get yourself into a respected cancer center as soon as possible. Find an oncologist that you trust and have a good relationship with, and then TRUST that doctor.
3. Take everything, except what your oncologist tells you to your face, with a grain of salt. There is a ton of real, semi-bogus and totally bogus information out there about magical cures and treatments. Ask your doctor about all of them but, in the end, do what he or she advises.
4. Take a step back, look at the road ahead as objectively as you can and try to be practical. It is the “C” word but, after all, it’s an illness not a curse or a death sentence. Come up with a treatment plan together with your doctor, follow that plan and do what you need to do in order to stay healthy
5. Don’t give cancer more power than it already has by thinking you can’t face it and just giving up. You can face it. Maybe not today, or all the time, but eventually and most of the time you can.
Lung cancer is just the same as any other kind of cancer. It will take the people you love just as heartlessly as any other form of the disease. It’s really good at taking people away; men and women, smokers and non-smokers, old and young, any race and origin. In fact, it’s better at that than most other cancers. We could all get cancer, and none of us would deserve it. We should fight it with research funding, trials, promoting new and existing treatments, by helping people pay for treatment, and everything else at our disposal. Not giving lung cancer the fight it deserves leaves us all that much more powerless to stop it from taking away someone we love.
Sillycat1957 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.
Sillycat1957 reacted to Tom Galli for a blog entry, Chemo Doesn't Work and Oncologists Get Rich
Chances are you pay attention to new treatment developments. I was aimlessly scrolling through a social media app when I happened on a dramatic interview. Everything was staged to look legit. The interviewer looked like a TV reporter, the background scene looked like a doctor’s office, and the set up question “doctor, let me talk about cancer a little bit” got my attention.
The camera changes views to the doctor as the reporter says, “what are some of the things you’ve seen in terms of your patients?” Then we see the doctor. He looks like a doctor, well dressed with a confident assuring voice. He changes the subject saying “a better thing to talk about“ and his name and titles flash and disappear on the screen: Peter Glidden, BS, ND (note not MD).
He cited an unnamed study published in the Journal of Clinical Oncology in 1994, a 12-year program that looked at adults who had developed cancer, further clarifying adult cancer as “the main type of cancer we get here in the United States.” He described the study as a “meta analysis of people all around the world for 12 years who were treated with chemo…and the result?”
“Ninety-seven percent of the time chemotherapy does not work.” Dramatically and shaking his head for emphasis, he repeats the same statement, then he asks “so why is it still used?” “Money”, he answers. “Chemotherapeutic drugs are the only classification of drugs that the prescribing doctor gets a direct cut of…the only reason chemotherapy is used is because doctors make money from it…period…it doesn’t work…97-percent of the time.”
Continuing, he says: “We have lost the war on cancer in the United States…why…when you try to bring a reductionistic phenomena like drugs and surgery to bear on a holistic phenomena, you will completely miss the boat each and every time.” Further he emphatically states, “if every girl in this country took 200-micrograms of Selenium, in one generation, we’d eliminate breast cancer by 82%; now why aren’t we doing that?”
So, let’s take a deep dive into Peter Glidden’s claims and supporting data. First, consider his probability predictions: 97-percent of the time chemo doesn’t work and 200-micrograms of Selenium eliminates breast cancer by 82% in one generation. These predictions sound authentic, like there was a test to determine outcomes. But, no scientist, doctor, or engineer would ever describe a statistically based probability outcome using just a naked percentage.
There is always uncertainty and professionals bound uncertainty with a confidence level. An engineer might say that concrete will achieve a 6,000 psi end strength but will disclose the testing sample size, mean, standard deviation and confidence level that justify the end strength statement. Test results never exactly replicate. The end strength will vary between some acceptable range. But Glidden’s claim is precisely 97-percent. It is unsupported. Moreover, it is debunked in the literature. Here is a good on-line summary about the unsupported claim .
But, to even make a 97-percent statement, one would need to know, with certainty, the cause of death of each of the thousands of people who had chemotherapy. Were autopsies performed? Might some have died of natural causes, traffic accidents or other illnesses? A statistically significant record of “meta data of people all around the world treated for 12 years” does not exist. Do they have data in the Fiji Islands, Kenya, Somalia, Bangladesh or North Korea?
How about his 200-microgram Selenium cure for breast cancer? He says it would eliminate breast cancer by 82% in one generation. I’m not even sure I know what eliminate by 82-percent means. Think about how imprecise this claim is. How long is one generation? How did you determine it was 82%? How sure are you it is 82%? I could drive a main battle tank through the gates of this claim’s imprecision!
Now to his claim that cancer is not a reductionistic phenomena, suggesting that drugs or surgery misses the boat “each and every time.” I’m one of those “each and every time” and my survival from drugs and surgery proves him wrong. Does naturopathic treatment actually cure cancer? I don’t know but neither does Gladden. Here is some interesting reading about Naturopathic Doctors.
Peter Glidden’s video extolling a simple nutritional supplement as a cancer cure is compelling. He is dramatic, confident and to a diagnosed lung cancer patient facing an arduous regime of chemotherapy, persuasive. Why bother with the chemotherapy if I can take Selenium and cure my cancer?
If you are reading this, you or someone you care about has lung cancer. Time is of the essence. You have but three choices: do nothing, conventional medicine, and holistic medicine or some derivative of the same. Do nothing is the least expensive alternative. You pay nothing and might live. Miracles happen.
Conventional medicine and holistic medicine will cost your money. How do I make the choice? I put my money on science-based conventional medicine treatment because treatment outcomes are repeatable. Mark Twain said it best: “It ain’t what you don’t know that gets you into trouble. It’s what you know for sure that just ain’t so.” Gladden is trying really hard to convince us he’s 97-percent sure chemo doesn’t work. It just ain’t so.
Stay the course.
Sillycat1957 reacted to Tom Galli for a blog entry, Olympic Surgery
The summer Olympics kindles an unpleasant anniversary. I was in hospital recovering from a failed bronchopleural fistula surgery complicated by pulmonary embolism, further complicated by pneumonia, and then aspirational pneumonia. After surgical mayhem and ensuing coma, I settled into a nil per os or NPO recovery from a uncooperative epiglottis. July, August, and early September of 2004 were clearly the worst days of my life. The only joy was watching Katie Couric’s daytime TV Olympic broadcast from Athens. Two weeks of Olympic distraction amid repetitive admissions to the ICU as my doctors, nurses, and respiratory technicians struggled to keep me alive.
I don’t have specific memories of the games or any athlete. I can only recall the TV setting for Couric’s broadcast -- a shoreline location framed by Greek coastal mountains in the background and the deepest blue ocean I’ve ever seen. I’d wait for her show to come on and the camera to pan along breathtaking vistas while smelling coffee and food deliveries. I longed for so many things in that time. The smell of hospital-grade coffee was so tantalizing, it almost undid me. Till I met the hospital speech pathologist. She delivered the undoing.
Lung cancer patients learn a lot about hospitals. Doctors, excepting surgeons and anesthesiologists, do very little hands on patient care. This is the realm of nurses and medical technicians. But, who treated my lazy epiglottis -- a speech pathologist. A young woman, as I can recall, small in stature but with the confidence and swagger of an army SERGEANT MAJOR.
For those not acquainted with a sergeant major, it is best you not cultivate a relationship. They make the army THE ARMY. They are not nice, friendly, kind or cuddly. They are confident, demanding, curt, and irascible, in the extreme! My speech pathologist was the hospital’s SERGEANT MAJOR. She chewed out my surgeon for slipping me a cough drop. “Can’t you read the NPO sign”, she barked in a voice that made doc jump out of his skin. The ENT doc who scoped my defective epiglottis deconflicted his visits to stay out of her range.
She was the only one in the major medical center who knew anything about treating a uncooperative epiglottis? And, like army sergeants major, she was a taskmaster. Indeed talking (screaming) was the therapy. She wrote out weird, difficult, nearly unpronounceable guttural sounds that I had to recite despite the discomfort of a nose-to-stomach feeding tube. She appeared 4 times-per-day to drill me, then often 2 or more surprise visits to ensure I was properly bellowing. This guttural workout, combined swallowed-thickened-liquid observed by a timid radiologist manning a fluoroscope in the presence of the sergeant major, lasted nearly a month. But it worked.
The 2016 Olympics are in Rio, but the games take me back to Athens and my speech pathologist sergeant major. Thank you Sergeant Major!
Stay the course.
Sillycat1957 reacted to Tom Galli for a blog entry, If it Walks Like a Duck
“Terminal stage IV lung cancer patient miraculously cured by cannabis oil.” “Frankincense oil kills cancer cells while boosting immune system.” “The real reason pharma companies hate medical marijuana is because it works.” If you are a lung cancer survivor, you’ve read these pronouncements. Hopefully, you don’t believe them. The purveyors of miracle cures are so persuasive that some people avoid conventional treatment and rely instead on the unconventional.
I remember my frantic web search for treatments after diagnosis. I explored conventional methods and learned about lots of downside and little upside. Reading the benefits of aromatherapy, guaranteed to cure my lung cancer by simply breathing a fragrant substance, was so appealing. Then as others learned of my diagnosis, I was bombarded by emails suggesting holistic medicine, Breuss diet, and magnetic therapy, to name a few. All that need be done to cure my lung cancer was move a powerful magnet over my chest for 30 minutes a day! Of course, one needed to spend thousands of dollars to purchase the special magnet but it was a money-back guaranteed cure.
There are miracles. These are medically documented instances where cancer stopped growing and spreading without treatment. But those touting magnets, cannabis oil, or a multitude of other treatments, methods, or substances (check Wikipedia’s list of unproven and disproven cancer treatments) are selling miracles. A miracle, in case you are wondering, is an event that defies explanation. No one knows why, including the seller of miracle cures.
When stricken by lung cancer, time is of the essence. We are often diagnosed at late stage and effective treatment must be prompt. Consuming time to undergo Miracle Mineral Supplement or Orthomolecular Medicine at great expense eats into this now precious time. Here are three tests one can apply to sniff out a phony cure: (i) drugs and procedures not FDA approved; (ii) drugs and treatments not covered by insurance, and (iii) the patient needs to pay large amounts of cash in advance of receiving treatments. Oh, and check out Quackwatch.
Our world is plagued by conspiracy as in: “big pharma has a cure but is withholding it from the market to boost profits.” Sure! Think about it. A publicly traded corporation has a cure for cancer and is not selling it—that would never happen. Recall how quickly we learned of Cuba’s cancer vaccine, and Governor Cuomo’s ex-officio trip to Cuba before restoration of diplomatic relations to negotiate putting the vaccine under accelerated FDA testing. A sure-thing cancer cure would be front page news on every paper around the world!
Oncology is a medical discipline founded on science and grounded by rigorous studies that are openly published and reviewed by doctors and scientists around the world. New treatment and diagnostic methods are well vetted to ensure both safety and effectiveness. An oncologist dedicates his or her life to treating people with cancer. When a board-certified oncologist tells me about a miracle lung cancer cure, I’ll believe it.
Till then, it walks like a duck.
Stay the course.
Sillycat1957 reacted to Tom Galli for a blog entry, A Political Test for Physicians?
I’m reading of a Yale University study that advocates we choose primary care physicians by testing their political views. It is political open season and medical reporters want to join in the feeding frenzy. The danger is some will believe a political test (views on motorcycle helmets, pot smoking and firearms to name a few) is necessary physician competency criteria, especially since the test is aimed at our closest and most important connection to the medical system—the general practitioner.
Although medical specialists (surgery and oncology) treat our lung cancer, we often develop illness unrelated to cancer, or just as likely, a side-effect runs wild. So a general practitioner (GP) is a very important part of our treatment team. Presuming you just realized you need one, what are factors a lung cancer survivor should consider in selecting a GP? Here is my list.
A Good Listener. Does your GP listen? This trait is essential for we have a serious ailment with complex symptoms. During chemotherapy, I didn’t have one symptomatic complaint, I had many and they overlapped and changed day-to-day. A listening GP will hear you out, then asks clarifying questions about symptoms before launching into an exam or grabbing the prescription tablet. Off The Clock. Does your session seem rushed? Some I know complain their doctor is “on the clock” like a game show contestant during consultation. That’s not good. Part of the consultation should be reviewing the reports of specialists involved in your cancer treatment. And, questions should arise after reports and test results are digested. A proper review with understanding takes time, not a beat the clock contest. Renew Specialist Prescribed Medications. Murphy’s Law of medicine is your nausea medication runs out just when your oncologist is booked solid. Do you have a GP that will come to the prescription rescue? Some doctors don’t want to intrude on practice privileges of other doctors. That may be a fine philosophy but when you are suffering and a simple renewal script solves the problem, your GP ought to write the script. This is a good question to ask when interviewing a prospective GP. Cancer Aware. In lung cancer treatment, there are medical treatment effects—say radiation burns; medical side effects—nausea, pain, numbness; and related medical problems—depression, chest infections and even common colds. Your GP should understand the complexity that a simple chest cold might mean to a lung cancer survivor. Questions and observations to ferret out depression is an important diagnostic role and treatment or referral are essential. Known and Respected. My GP was the quarterback of my treatment team. He selected the players (specialists), monitored their treatment, and intervened to steer the team to a solution that saved my life. Your GP needs to know practitioners and be able to influence their actions when medical timidity breaks out. That speaks to a seasoned professional well known in the local medical community. Politics and medicine should be like oil and water—never to mix. Medical doctors have a higher calling and abide by the Hippocratic Oath. They swear to share medical knowledge, act always to benefit the sick, and to treat those ill warmly with sympathy and understanding. In stark contrast, I can name quite a few politicians who forgot taking an oath of office the instant after administration.
Sillycat1957 reacted to Tom Galli for a blog entry, Targeting My Type With Chemicals
“Squamous cell cancer offers distinct therapeutic challenges by virtue of presentation in older patients, its physical location in the chest, pattern of metastasis and association with comorbidities that can compromise treatment delivery and exacerbate toxicity.” This quote is from the article Targeted Therapy for Advanced Squamous Cell Lung Cancer.
When diagnosed, almost 13 years ago, I didn’t realize lung cancer had types. Pathologists visually classify lung cancer cells seen under a microscope as small cell and non-small cell. From this simple delineation, further classification gets complicated introducing sub-type terms of adenocarcinoma, squamous cell and large cell. Large cell as a type of non-small cell? I recall dwelling on the large cell moniker and finally concluding a non-small cell can be a large cell.
I remember the emergency room physician telling me I was lucky; my form of lung cancer was treatable compared to the other type. He didn’t say small cell, but I think that is what he meant. Indeed about 15-percent of us suffer from this nasty presentation that metastasizes rapidly.
Adenocarcinoma sub-subtypes have morphed into an alphanumeric soup as research at the genetic level identifies biomarker profiles, mutations in an individual’s lung cancer that can serve as attack portals into the cancer cell by targeted therapy. Now adenocarcinoma survivors use terms like ALK, KRAS, EGFR and PIK3CA to further classify their disease and new targeted treatment drugs emerge to attack, like mutant Ninja Turtles! Some of these are so effective, they’ve moved to first-line therapy.
Adenocarcinoma describes a type of cancer that occurs in the mucus-secreting glands throughout the body. Lungs naturally have an abundance of these glands but so do the prostrate, pancreas, and intestines. Squamous cells derive their name from the Latin squama meaning scale like those present on a fish. We have a lot of squamous cells including skin, the lining of hollow organs, and passages of digestive and respiratory tracts. The right main stem bronchus contained my squamous cell tumor. The location is what tipped-off the emergency room physician; he didn’t realize how lucky I was given the nature of my treatment and extent of survival.
Speaking of treatment, the cited article reports: “therapeutic progress in squamous cell lung cancer has been relatively slow, with relative stagnation of survival numbers….Treatment for SqCC [squamous cell cancer] of the lung remains an unmet need, and novel strategies are needed including specific targeted therapies….” That’s not good.
First-line therapy for many continues to be the dual recipe of some variation of taxol and carboplatin, the same drugs I was administered from 2004 through 2007. And, survival rates have not significantly changed despite chemistry changes in platinum and taxol based agents. Thankfully, these have lowered the incidence of peripheral neuropathy and this is helpful.
Second and subsequent line therapies for squamous cell have benefited somewhat from research. Immunotherapy research has yielded some success in developing drugs that enhance our immune system’s ability to recognize and attack cancer cells. The alphanumeric monikers PD-1 and PD-L1 are starting to resonate with squamous cell survivors. I do like the names of these approaches ⎯ PD meaning programmed death! The idea of programming cancer cells to die is satisfying although that is not the means of attack. Nevertheless, the scientist that named this approach deserves recognition because a scheduled execution of squamous cancer cells would be well deserved payback. All squamous lung cancer cells are programmed to die tomorrow at high noon!
But, progress in the genetic arena for squamous cell cancer has been slow because it is genetically more complex compared to adenocarcinoma and mutates faster. So it is a harder target to hit. When I think of hard cancer targets, I am reminded of Siddhartha Mukherjee’s superb book The Emperor of all Maladies. He aptly describes the challenge of chemotherapy as “finding some agent that will dissolve away the left ear and leave the right ear unharmed.”
He also called cancer a “clonally evolving disease.” Cancer cells grow by cloning at a rate far faster than normal cells. Every new cohort creates mutants and some of these survive the assault of chemotherapy. All that need survive is one; it will rapidly grow now immune to the drugs targeted to kill it. Mukherjee said: “the genetic instability, like a perfect madness, only provides more impetus to generate mutant clones. Cancer thus exploits the fundamental logic of evolution unlike any other illness.” Cancer is pure evolutionary nastiness!
“Better things for better living through chemistry” was the tagline of the DuPont Corporation. Growing up in southeastern Pennsylvania, many neighbors were chemists commuting to the company research center, just across the Delaware state line. DuPont changed our world evolving from an 1802 gunpowder maker to inventing Nylon, Mylar, Teflon, and Nomex to name a few. Squamous cell lung cancer survivors need better chemistry. The call goes out for a biochemist to step-up and shut down the perfect madness of the clonally evolving squamous cancer cell.
Stay the course.
Sillycat1957 reacted to Tom Galli for a blog entry, Lung Cancer's Painful Quadratic Equation
Early on, we learn Algebraic equations with only one solution. Then we encounter equations with two solutions -- Quadratic Equations. Consider: x2 + 3x – 4 = 0. This has two solutions: x = -4 or x = 1. Both are correct; one is negative and one is positive. Algebra students get very comfortable with solutions having a positive and negative outcome -- lung cancer survivors are less comfortable!
The positive outcome for lung cancer is extended life. But like quadratic equations, there can be negative outcomes that are less desirable. Mine is chronic pain. So to the question, how does one fit a negative outcome into the positive? No, Algebra does not help. But, for those in treatment or surviving after treatment, preparing for life with negative outcomes is helpful.
My chronic pain has two primary and many secondary causes. I have peripheral neuropathy -- numbness in fingers and toes including a burning sensation in toes and pain in the foot joints. It is a common Taxol side effect, and we informally call it “taxol toes.” Also, I have nerve damage caused by quite a few surgeries to my right chest that is chronically painful. How do I fit these negative outcomes into life?
My strategy is to tolerate chronic pain until bedtime. Then something must be done or I won’t sleep. I’ve cycled through over-the-counter, then prescribed sleep medications. Both worked for a while. Doc found a study suggesting a therapeutic effect for Xanax on chronic pain. He prescribed a 0.5mg dose at bedtime, allowing an increase to a total of 1.5mg. This relaxes me and makes me drowsy. It works about 6-in-10 nights.
A secondary cause sometimes drives pain above chronic levels. These are: chemotherapy induced joint pain; muscle cramps; stress, anger and excitement; sneezing and coughing; and flying on aircraft. The joint pain, an in-treatment side effect, required narcotic medication in every case to relieve. Reliance on narcotics has two downsides: an inability to think and function normally the next day and constipation. However, other secondary causes occasionally require narcotic medication to achieve relief. Because of the downside to narcotics, we’ve developed a couple of unique pain abatement procedures that may be of interest.
Our first strategy is to apply prescribed lidocaine transdermal patches to incision scars and or feet in combination with Xanax. Since lidocaine dosage is limited to 2 patches, my wife cuts them into strips and fits them along my incision scars, and applies them to my feet. A pair of tight fitting socks are stretched over my feet to keep them in place. When the offending pain spike is either in my chest or feet, a full 2-patch application is used. The patches are applied in time to allow the Xanax to work and I sleep, hopefully.
The next works only for feet and is a back-up strategy if lidocaine fails. My wife uses an ace bandage to wrap reusable frozen Blue Ice packs to the bottom of each foot. The cold is very uncomfortable for a couple of minutes, but in a short time my feet are numb and if I’m lucky, I sleep.
Muscle cramping is a long term side effect from chemotherapy. It stems from low Magnesium blood levels. I take at least 500 mg of Magnesium supplement per day. My oncologist would rather I take 1000 mg, but I suffer digestive system revolt. I learned that almonds provide 75 mg of Magnesium per ounce so I snack in lieu of a second pill. Regardless, I still experience one to two cramping events per day. When they occur anywhere near my feet or chest, chronic pain soars. There is however, no remedy for cramps. The worst occur in the middle of the night and wake me up.
Archimedes, the ancient Greek hydrologist, provided an explanation for why immersing up to my neck in a swimming pool eases incision pain. The upward buoyant force of the water offsets the gravitational pull on chest incisions thus minimizing pain. Almost every day our community pool is open, I spend hours in the water. This does not eliminate pain but reduces it noticeably. On leaving the pool, the normal level returns but it is very therapeutic. Lying in a bathroom tub, unfortunately, does not work because there is not enough water for complete submersion. A hot tub works fine, but there is no difference in pain relief from water temperature.
Flying in a commercial airliner also spurs chronic incision pain. Most airlines pressurize their cabin between 6,000 and 8,000 feet pressure altitude. This lower-than-sea-level pressure expands my chest cavity increasing incision pain. All commercial flights hurt but long flights are very painful often requiring a dose of narcotic medication in flight. Not flying is the only remedy. Those having thoracic surgery have long complained of incision pain after commercial air flights and cabin pressure is the cause.
Another secondary cause is extensive coughing and sneezing. Sneezing is particularly bad when it is a “surprise sneeze”. During the worst pollen events, I stay indoors and I try and avoid school age children to keep the chest colds in check, especially when school is in session. The last secondary cause I have the most control over: stress, anger and excitement. Admittedly, excitement is the easiest to control except when the Dallas Cowboys are playing my beloved Philadelphia Eagles. These two games a year are indeed stressful and since I live among cowboys, someone is going to be angry over the outcome.
My wife reminds me when I complain too much that I am lucky to be alive. What’s a little pain given the alternative. She’s right. Doc reminds me to avoid scheduling things in the morning so I can sleep-in late if pain interferes. He’s right. Football season is right around the corner and it is a good thing games are scheduled in the afternoon and evening.
Now if the Eagles start winning, everything will be fine!
Stay the course.
Sillycat1957 reacted to Tom Galli for a blog entry, Hope Is A Good Thing
Red, in white shirt and loose thin-black tie and sweating in Maine’s summer heat, is leaning on a rock-wall fence. He’s just opened Andy’s letter found under the black obsidian rock. In the background we hear Andy reading his evocative description of hope: “Remember Red, hope is a good thing, maybe the best of things and no good thing ever dies.” The movie Shawshank Redemption is a powerful story about hope and life with a message that should resonate with every lung cancer survivor.
I watched the movie the other day and made the connection. Andy was imprisoned for two life sentences with no possibility of parole. He was wrongly convicted of murder and throughout the story of his day-to-day life in prison, everyone tells him “hope is a dangerous thing.” On escaping, Andy proclaims that hope is “maybe the best of things.” The movie story line is exactly parallel to the plight of the late-stage diagnosed lung cancer patient ⎯- an unforgiving disease with hope as the most effective means of avoiding consequences.
For lung cancer, hope is not a medical remedy. While new lung cancer treatments are emerging more frequently now, basic research funding to diagnose and treat lung cancer lags other cancers. Perhaps the pace may pick up, one hopes. Perhaps a treatment may emerge just in time to save a life, one hopes. Perhaps a miracle remission occurs, one hopes. Hope may not be a medical remedy but, for many of us, it is our only effective medicament. And, in my case, hope is “maybe the best of things.”
Recall the story line of Shawshank. Andy’s future is confinement in a mind numbing institution, but he makes a choice to live in a different reality and works diligently, every day, on a novel escape plan. He makes a conscious decision to live. He embraces the hope of escape against all odds. Andy’s poignant characterization about life reveals his reasoning: “I guess it comes down to a simple choice, really. Get busy living or get busy dying.” Exactly!
Sometimes in the heat of lung cancer treatment, we forget its purpose ⎯- extended life. No one knows how long but life for most is extended. So what do we do with the extension? Re-read Andy’s characterization.
We long for a period of life extending into satisfying old age. But most without lung cancer do not dwell on the amount remaining on account. Lung cancer patients take careful measure of the balance. But, measure for what end? I believe, if one chooses treatment, then one chooses life. Rather than dwell on the remaining balance, focus on doing something you enjoy everyday. I suggest a survivor forget the past, declare the future irrelevant, and live in the day.
“Get busy living or get busy dying.”
Stay the course.
Sillycat1957 reacted to Tom Galli for a blog entry, Therapy Online?
The nature of the World Wide Web is the essence of its creators. We’ve made a conduit of ideas and information that chronicles every facet of human behavior and lots of non-human behavior. One can find a searchable version of the bible and then click to something that would be an embarrassing find in the bible. The Internet is encyclopedia, newspaper, entertainment, and abstraction all available with only one precondition, access.
I was diagnosed with late-stage lung cancer in 2004. The Internet existed but people-to-people interactions were limited to mostly email. Nevertheless, the Internet allowed access to all kinds of information about lung cancer—some of it scholarly and some of it junk. As I recall, there was nothing resembling today’s cancer message boards where people could communicate, consult, and commiserate with one another. Today, there are many and I’ll reveal how one helped me recover from depression and find hope.
In March 2006, I was in active third line treatment, infused Taxol and Carboplatin hardened by the oral chemotherapy drug Tarceva. After three failed surgeries and twelve failed chemotherapy cycles. My lung cancer was persistent and I was depressed. Watching TV on a Sunday afternoon in the throes of side effects, I saw a CNN broadcast interview with Phillip Berman, M.D. Phil was a radiologist, never smoker, and lung cancer patient who ironically was diagnosed about the same time as me. He started a cancer blog to keep friends and family informed about his treatment. It morphed into RedToeNail.org. I joined, thus starting my therapy online.
Why does it work for me? First is recognition that I’m not alone. Cancer treatment is a slog through appointments and side effects. It is beneficial to be reminded that others are trudging that same ground. Next, these people understand my disease, its treatments and mistreatments. Moreover, they have useful tips and tricks that work! I recall to this day the suggestion I eat a steamed bowl of plain rice each morning before taking Tarceva. It laughed at Imodium, but respected the rice. Last, it is a channel for me to express my thoughts, ideas and uncertainties with people who completely understand. To say they’ve been there and done that is a vast understatement. They designed the tee shirt the experts purchased!
Today’s Internet has many opportunities to connect survivors and caregivers. There is the ubiquitous thumbs-up symbol, short sentence reply, and emoji of popular social media platforms. This is fast-paced therapy connecting hundreds, perhaps thousands quickly. It is useful, but I prefer message boards. I like to take the time to read, reflect, and recall my experience when someone reaches out for help. Both, however, are effective. It is interesting to explore why.
I’ve attended hundreds of cancer support groups. They are beneficial, but I well recall my first several sessions. Certainly I was made welcome, but the fear I had of my disease was bested only by the fear I felt talking about it. I’m a relaxed public speaker but not a public cancer speaker. As I grew comfortable with a group, I realized another downside. Regulars stopped showing up. The very nature of lung cancer makes support groups a population in decline. Moreover, treatment side effects always seemed to coincide with the support group meeting. People in treatment didn’t feel well enough to attend.
I’ve also been an individual support resource both in person and telephonically. First meetings are a bit awkward but these can be very effective for both survivors. There is a shared experience and in every case, this led to a meaningful relationship. There is that same downside of the support group; lung cancer claims a life and now it is a life I was personally and emotionally connected to. It takes a very special constitution to provide survivor-to-survivor support and mine doesn’t measure up.
So I work the message boards, mostly at the LUNGevity Forum but some others. I am relatively new to the LUNGevity Forum and it is fascinating to read the history of the survivors, year after year. Some move on to other activities but return after a long absence to a rousing welcome.
Why? For exactly the same reason online support resources are so effective. We celebrate life. Stop by and say hello.
Stay the course.