Deb W reacted to Tom Galli for a blog entry, Uncertain Treatment Outcomes: A Baseball Model
Baseball is a game that requires patient players and fans. Like lung cancer treatment, there is a lot of waiting for something to happen. Also like lung cancer, the game is unpredictable. A single pitch can change the outcome of a game like a single cell can change the outcome of treatment. And like lung cancer, baseball has many uncertainties and these are defined by odds. The best hitters succeed a little better than one in three times; the best teams winning about six in ten games. Baseball players need to persevere against low odds of success to achieve victory. So do lung cancer patients.
A lung cancer diagnosis is devastating. Recurrence after treatment is common and traumatizing. We ought to prepare for the distress of recurrence. Treatment, even for those diagnosed at early stage, is not likely to be a walk-off home run. I was not prepared for treatment failure. How common is recurrence?
A National Cancer Institute study suggests about 33 percent of stage IA and IB patients experience a reoccurrence. Up to 66 percent of stage IIA, IIB, or IIIA experience a reoccurrence. Interestingly, these percentages are virtually identical for both adenocarcinoma and squamous cell lung cancers. What about stage IIIB or IV disease? The study reports recurrence about half that of lower stages but suggests this is due to competing risk of mortality.
Including surgery, my treatment success average was a dismal 1 for 5. That translates to a baseball batting average of .200, yielding a quick trip to the minor leagues. I had four recurrences after no evidence of disease (NED) treatments. We didn’t know perseverance was a requirement and we were not prepared.
How should we prepare? Here is what I didn’t do. Have a frank conversation with my oncologist seeking information on recurrence likelihood. Share this information with my family to ensure they were prepared for bad news. Finally, celebrate my NED state by fully engaging in life. NED is that extra life treatment buys and we did not take maximum advantage of it.
A sidebar benefit of surviving is accumulating lessons learned. I now completely understand that lung cancer is a persistent malady that is difficult to eradicate with unpredictable treatment outcomes. Like the best baseball players, we need to take our turn at each new treatment with a fresh perspective, forgetting our last experience and striving only to put the ball in play and arrest our disease.
Stay the course.
Deb W reacted to LCSC Blog for a blog entry, New Year, Old Problem: Cancer
As I sit and write here, with too much time on my hands, I can't help but consider my lot in life. In a little less than two months: Feb. 20, I will celebrate (if that's even the right word), the 12-year anniversary of my original cancer diagnosis. On that date, I received a phone call at work from my internal medicine doctor advising me that the previous week's surgical biopsy indicated a malignancy in my lungs. The following week, Team Lourie was sitting in an oncologist's office waiting for the other shoe to drop. And boy, did it drop: non-small cell lung cancer, stage IV. Accompanied by a "13 month to two year" prognosis with very little encouragement or statistical probability to give us much reason to hope. In answer to our predictable question, the soon-to-be my oncologist offered up a tantalizing prospect: "Could you be the one" (literally) that outlives your prognosis? It was hardly heartfelt, but his answer was "Yes."
So off I didn't fly into the wild blue yonder. Instead, I shuffled out his office and with my head down, exited the building and staggered into my car where my wife, Dina and I attempted to process the information we had just been given. I don't recall there being much discussion during the 30-minute drive home or even after we had arrived. To tell you the truth, besides still processing the information we had just received, we were pretty much in a daze (hence the overall name for my columns: "Daze of My Life") and were so blindsided by the seriousness of what we had just heard (no cancer history in my immediate family as well as my being a lifelong non-smoker), we almost couldn't talk, probably didn't talk and any talking we did was likely empty and hollow. Imagine being told, out of the blue, that you could be dead in less that a year, maybe even before your 55th birthday. Heck, both my parents lived past 85. That's what I've been anticipating. To think that 30 years yet of my future life had just been taken away was almost too much to believe. But since the oncologist was not the least bit in doubt about any of the results or how to proceed (we didn't feel the need, given the urgency and conviction with which the oncologist spoke, to even get a second opinion), we decided and committed that very day to starting chemotherapy the following week. It seemed clear that there was absolutely no time like the present.
Though the dozen or so tumors in my lungs "never acted" as my oncologist expected (growing and moving) it wasn't until Dec. '19 a year or so after a large tumor appeared below my Adam's apple that a new surgical biopsy was performed. The results of which indicated thyroid cancer, which a few weeks later led to my having a thyroidectomy (thyroid removed) per the direction of my newest doctor, an endocrinologist (who has been treating me ever since). When the post-surgical biopsy confirmed yet again the existence of thyroid cancer, my reclassification as a thyroid cancer patient was official. Soon thereafter, my treatment for thyroid cancer began, first an overnight at the hospital and then daily lenvima pills. As a result, I am no longer being treated for lung cancer, just thyroid. The question has raised its ugly head in these last few months: Was I misdiagnosed or did I have two types of cancer? And if I do have two types of cancer and one/the lung cancer is not being treated, am I in reality a "dead man walking"? Ignoring/not treating lung cancer is generally speaking, not advisable. As my oncologist said to me many years ago about my having lung cancer: "I can treat you but I can't cure you." Not exactly words to live by.
It's on these anniversaries and the last few months leading up to them when I focus even more on my circumstances. How does that actually occur when my having cancer already consumes my conscience and subconscious? I can't really explain it other than to express the amazement and good fortune that I'm still alive. All I know is, I'm always happy when I wake up the next day and the anniversary has finally passed.
Deb W 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.
Deb W reacted to LCSC Blog for a blog entry, A Question of Time
Let us presume, for the sake of this column, that I only have papillary thyroid cancer stage IV, and that my years as a non-small cell lung cancer patient, also stage IV, are over. If true, it begs the question, which I have been asked twice since this recategorization has become - in my circle anyway, public knowledge: how does it make me feel (to no longer be one scan result away from having months to live to now having years to live)? As obvious an answer as it should be: I can't exactly get my mind around it. I keep hearing that "If it's too good to be true, it is" advisory in my head. I realize medicine is different, and that's what scares me.
Well, I can't really say I feel as if I have my life back because I never really lived like it was gone. I pretty much - treatments and side effects notwithstanding - tried to maintain my normal life and to continue my routine as well. I didn't stray too far from my well-established dos and don'ts. I didn't write down a bucket list and therefore spent no time pursuing long-standing goals. I just did what I have always done. I didn't want to be controlled by my cancer; doing things, taking trips, etc. just because I had a "terminal" diagnosis. To my way of thinking, that would have been akin to reinforcing a negative: a cancer that was likely to kill me sooner rather than later so I better do such and such or else. Instead, I just lived my regular life and felt no pressure to cross off items on a bucket list before I died. In spite of living life not as if I was dying, but as if I was going to be living, (unlike the country music song that expresses a different sentiment) I survived beyond my wildest timeline: so far, 11 years and nine months after initially being given a "13 months to two years" prognosis.
Fast forward to the most recent - and amazing news: I hadn't miraculously survived non-small cell lung cancer after all, I had merely survived a very survivable and slow moving thyroid cancer (that has - or had previously, metastasized to the lung). Though my oncologist still thinks I have two types of cancer, my endocrinologist thinks I only have - and have had - one type: thyroid cancer. The Lombardi Cancer Center head and neck cancer specialist also feels like I have one cancer: thyroid. Her reasoning, after reviewing my medical records, was a bit more direct: "If you had lung cancer diagnosed 12 or so years ago, we wouldn't be here having this discussion. You wouldn't be alive." So being alive is proof, a type of proof I suppose, that I've had thyroid cancer all along and never had lung cancer.
Not that I want to be thick-headed but after nearly 12 years of being told that I had lung cancer and living scan to scan every two to three months and anxiously waiting as well for my lab results every three weeks
I find myself unable to let go of the worst case scenario that has been my life since Feb., 2009, and embrace this amended diagnosis. I can't seem to turn off my internal anxiety/fear clock. In fact, it's still stuck in its original position. I'm like an ocean liner headed out to sea. It can hardly turn on a dime and neither can I. Certainly I want to believe it and I don't really doubt the thyroid cancer opinions I've received, but it just seems that having your wildest dreams come true after almost 12 years of trying to accept the reality of your cancer situation/early death is too much good fortune for anyone to imagine/realize. It's the opposite of normal. As much as one might want it to happen, it's just not the way it generally works. I don't suppose doctors hand out terminal diagnosis before giving it extra ample thought. And yet, I'm about to be living proof.
Nevertheless, every day, the shock of it begins to wear off and I can contemplate my future once again. No more will I count the days between scans. No longer will I dread reading my lab work and wondering what it all means. Oddly enough, what it all means is that I'll probably continue/resume my previous life, boring and mundane as it was because, well, it worked for me then so I imagine it will work for me now.
Deb W reacted to LCSC Blog for a blog entry, Canceritis
There are two generic types of cancer: the cancer that you have, and the cancer that has you. And the yin and yang is what defines 'canceritis.' The internal struggle between being defined by your disease versus living a life in spite of your disease. The former is easy; you're a victim of an insidious, in some cases, incurable disease that causes myriad problems, shall we say; physically, emotionally and psychologically. The latter is hard. Sometimes, overcoming the former in order to live the latter is much easier said than done. The reason being, primarily, that cancer isn't a killer because symptoms, treatment, and side effects are always manageable and overall mental/emotional demands are easily compartmentalized. Nothing could be further from the truth. In fact, the truth is that if the disease, treatment, and side effects and/or anxiety/stress about your diagnosis doesn't get you, the total disruption of your life and/or routine will.
Not that you lose free will, but you do lose a fair amount of control. While cancer is in the house, cancer rules the roost. Somehow, even though the disease and all is all about you, you must find a way (navigate) a path forward that enables you to set aside the physical and emotional demands of a terminator-type disease. With many patients, the cancer won't stop until it kills. And for the hundreds of thousands of cancer patients who die every year, wishing, hoping, praying and being compliant to their doctor's instructions, the outcome though hardly guaranteed is not particularly encouraging either. The disease takes its toll and despite all the efforts of the king's men to put Humpty back together again, the ravages of cancer often prevent the patient from ever being whole again.
Sometimes, the damage is already done as it usually is for non-small cell lung cancer patients who often are asymptomatic until they're not (as I found out firsthand). Then you're told you have a "terminal" form of stage IV lung cancer thatis described as incurable, which meant for me, being told I had 13 months to two years to live. The question I asked myself back in Feb 2009: What the hell happened to stages I, II and III? This is what cancer can do: travel at warp speed and not leave too many clues. Finding some kind of work-around/plan "B" to deal with the loss of control and helplessness might keep the patient from descending into an emotional rabbit hole from which there's a scant chance of recovery. At this juncture, the cancer is in charge.
This is the challenge: overcoming a disease which in many instances is beyond your doctor's/modern medicine's ability to control. Just imagine living with the knowledge that every day you wake up is a day borrowed against future days when you might not wake up or if you do, might feel so poorly that the point of trying to feel better becomes more of a fool's errand than it does a practical alternative. Cancer is not literally a four-letter word but it's most definitely in its own category: a six-letter word which makes all four-letter words meek by comparison.
Somehow, you must restructure your understanding of your cancerous condition and philosophize: everyday you wake up and feel something isn't a day that's lost. It's a day that's found. Making the most of these emotional crumbs is not a guarantee of anything. Rather, it's an attempt to prevent things from getting worse. And as any cancer patient will tell you: it can always be worse. And until it's the worst, try to embrace whatever remains as the best.
Deb W reacted to LCSC Blog for a blog entry, And So It Begins
Eleven years, six months and two weeks, approximately, after being diagnosed with "terminal" cancer (stage IV non-small cell lung cancer), I have begun my treatment for stage IV papillary thyroid cancer. I'll be taking three pills a day, all at once, same time every day. The list of possible side effects are as long and scary as it presumably gets (blood clots, arrhythmia, to highlight just a few). I doubt its bluster. Likely somewhere between it depends and probably. Every patient is different of course so what happens next - to me, can only be forewarned. It cannot be foretold - with any kind of certainty, that is.
What I've read about these straight-on effects so far is somewhere along the lines of the cancer untreated would be worse so pick your poison, I suppose. I didn't exactly pick, but the poison - euphemistically speaking - if not literally, which has been prescribed, arrived by mail at my home as of 1:30 this afternoon and I see no reason to wait. Gulp. Let us go forth in hope because there are no guarantees here. The guarantees left the building late Feb., 2009 with my initial diagnosis. Maintaining a positive attitude and a good sense of humor has to remain my not-to-so-secret weapon. Granted, wishing and thinking a thing doesn't make it so, but moaning and groaning about it will be neither productive nor prudent. It would simply reinforce a negative and as Brian Dennehy (a.k.a "Cobb") said in the movie "Silverado" about a completely different subject: "We can't be having none of that now, can we?"
I think the reason I'm meandering about here and in life is that I don't have a clear understanding of my prognosis yet, though I have asked. Moreover, since my new normal has only just begun, I don't have my routine down and as a result, the treatment process has not become second nature. And until it's no longer first nature, I'll be more preoccupied and cognizant of what I'm doing and why, and when I should be doing it. Primarily, this confusion/series of arrangements has to do with coordinating taking the three thyroid cancer pills with my current and pre-existing - going back 11-plus years, pill regimen which involves upwards of 60 pills daily. It's not overly complicated. It's just new and some pills shouldn't be taken together as is the case with the synthroid medication, the anti-nausea pill and additionally, not all pills can be taken with food, without food and so forth. I realize this isn't rocket science, but my life sort of depends on it, so it's kind of important that I pay attention to what and when I'm ingesting.
And it's this newness that is scary because it represents the great unknown - for me: Will the side effects be debilitating, life-changing? Will they be treatable/manageable? Will my life expectancy once again be front and center as I wobble back and forth from lab work, diagnostic scans and follow-up appointments? Previously I sort of knew where I stood. Now, I don't really know anything. Oddly enough, having been there and done that is not as comforting as I would have anticipated.
Even though I've switched over - so to speak, from lung cancer to thyroid cancer, I can't really say I've experienced a "Serenity now-" type moment. I'm not nearly so confident in my outcome now as I sort of was when I only had lung cancer. Being diagnosed with a 'new' cancer, 11-plus years in the presenting, hardly reassures that all is under control. I mean, what about my "incurable" lung cancer? We're not treating it anymore. Is it going to now grow and reassert itself and if it does, will we then stop the thyroid cancer treatment? It seems that there could be a return to sender situation here where I'll be back and forth between oncology and endocrinology. I'll figure it out. I'm not afraid to ask the tough questions. It's the answers that might scare me though.
Deb W 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.
Deb W reacted to LCSC Blog for a blog entry, Time and Again
Not to be morbid in the least or self-indulgent in the most (last week's column, "Something or Nothing" not withstanding), but recently I've had cause to hear about the future and be more concerned about the present.
I have a homeowner problem that, like all such problems, is way beyond my limited skills: a crack in the concrete slab which "porches" our house, apparently caused by a very large and old tree growing way too close to this slab. This is not a water-leaking-into-the-house problem. This is a structural-type problem identified by a home appraiser whom I've paid for - but not bought - to process a mortgage refinance. Given the two-week time-frame during which I was expecting to schedule this assessment - considering the time-sensitivity of these applications, I was flabbergasted to learn that my expectations were totally unreasonable. Two weeks! I might as well have been asking for two months, which is what I ended up getting.
After hearing the nearly identical appointment-unavailability story multiple times, and getting increasingly frustrated and impatient at the unlikely timely resolution of my problem in my lifetime (no joke), I finally heard from a company that was able to schedule an appointment which they did so with an apparent straight face (as much as I could glean over the phone): "I can have someone to your house on October 25." I snickered. "October 25! That's two months," I said. ("I could be dead by then," I said to myself.) To the woman I said, "No. I need someone sooner, in the next week or so. Good-bye." (I made this call on August 21st.) When I hung up the phone, I started laughing at what I didn't say and why I hadn't said it. Being that I have stage IV lung cancer, I am not exactly on firm footing. I didn't say to the woman that I could be dead by then because those words were figuratively speaking a bit to close to my literal reality. It was a case of fiction being a bit too close to fact and my mouth actually being able to cash that check. In addition to providing fodder for this column, my calls to miscellaneous home improvement/concrete/foundation repair companies left me not high, still dry, but totally unrequited. I needed help. I put myself out there and received practically nothing in return. It is a lesson I'll take to the grave.
I don't want to sound unreasonable because I still think I'm of sound mind (not so much sound body), but being diagnosed with cancer does, at least in my experience, move up your timeline, so to speak. There's a certain amount of patience and accommodation that is totally ripped from your subconscious. When your life is in jeopardy, dealing with the daily double life and death becomes extraordinarily difficult, regardless of whether your answers are in the form of questions. The uncertainty of it all is very off-putting. Sometimes, you don't know whether your coming or going. Trying to live a "normal" life under these kinds of constraints - and restraints, can make Jack a very dull boy. And very often this dullness manifests itself in one's inflexibility. When your life is at stake, it's nearly impossible to act as if it isn't. Your brain seemingly gets rewired and re-purposed. As much as you attempt to retain your old and familiar self, this newer cancer-affected version slowly takes over. You're not exactly in "The Twilight Zone," but "imagine if you will" at age 54 and a half, expecting to live into your mid-80's as your both your parents did, instead being told that you have "13 months to two years" to live? Though I've taken it mostly in stride and lived way beyond my oncologist's expectations, to say one's stride is not changed by the experience is to give naiveté a whole new meaning. (Not to mention the fact that the neuropathy in both my feet makes walking extremely difficult.) Nevertheless, life goes on.
As such, as much as I want to plan for the future, sometimes, it's the present for which I need to plan.
Deb W reacted to LCSC Blog for a blog entry, Barbasoul
That was a close shave, if I may euphemistically characterize my most recent, blade-free brush with cancer-like symptoms, especially considering that I thought my life was at stake. The pain was located around my left-side rib cage, exactly where the pain was on that fateful January 1st, 2009 day when I couldn't ignore it any longer and thus felt compelled to get off the couch and go to the emergency room. Though I didn't have any shortness of breath, or difficulty inhaling, exhaling and bending over (all of which I had back then); nonetheless, I thought the worst and didn't fool around this time and made an appointment with my primary care physician as soon as possible, which was for the following day. I didn't have a great sleep that night but it was somewhat improved knowing I might get an answer the next day.
To say that my life was beginning to pass by is a bit of an overstatement to be sure, but it was moving around a little bit. Trying to bury/compartmentalize what a possible recurrence/resistance to my current standard of treatment would mean before I actually met with a physician and received cancer confirmation was the immediate task at hand. Rationalizing that what symptoms I wasn't experiencing meant something positive/encouraging compared to what I felt 10 and a half years ago was one mental route I was traveling. The other was my usual and customary fall-back position: "It's nothing until it's something."
However, I have to admit 'something.' Though I can't speak for all cancer patients/survivors; for me, in spite of my inherited-from-my-father, positive attitude, being diagnosed with a "terminal" disease, as clearly described by my oncologist back in late February, 2009, creates a sense of inevitability, as does the "13 month to two year" prognosis that followed. Inevitability, as in one's demise (I'll never forget the walking-down-the staircase-with-a-yo-yo example he used) and then death is only a matter of time. Time which you don't have and quality of life which you'll never get back.
And when that 'inevitability' is most clear is when you have symptoms (related to your cancer or not; you don't know definitively, at least I never do), especially if those symptoms are identical to the ones that got you into this jackpot in the first place. So yes, I've had a difficult few days fighting the inevitable feelings and wondering if my amazing good fortune had finally run out. After all, a "terminal" disease doesn't generally mean you go on living a normal life expectancy. Au contraire. It means you don't! And at some juncture, the cancer spreads beyond modern medicine's ability to manage it. Then the patient is given a choice: stop the treatment and try to enjoy your remaining days without side effects, and thereby live a less cancer-centric quality of life with some freedom and independence - and hopefully feel some kind of better. And in those intervening days, try not to worry about the cancer doing what it inevitability (there's that word again) does, which is not cure itself. Or try some experimental treatment and hope for the best.
This is the emotional concern and challenge which hangs over my head. Never more so than when I have the symptoms that I did this past week. Fighting the cancer and fighting these feelings is two much. One at a time I can handle. Handle it I did as I sat in my doctor's office and in great detail, described my symptoms, and explained what I was feeling and what I wasn't. My internal medicine doctor listened intently as he has since the very beginning when I was first diagnosed. He was calm and reassuring in his assessment. My symptoms he said were not cancer-related. They "were muscular," he continued, "on the outside of my lungs." Not lung cancer at all. As such: No lab work. No X-Ray. No CT scan. No nothing. Another reprieve. Life goes on, until...
Deb W reacted to LCSC Blog for a blog entry, Don't Monkee Around With Me
I mean, he didn't even examine me, which he rarely does. (The CT scan pretty much tells him what he needs to know, so he says.) In addition (or is that subtraction?), he didn't even ask me the standard questions he typically does about my quality of life, activities of daily living, and general health and welfare. In fact, near the presumptive end of our appointment, as peculiar and uncharacteristic of an appointment as it was, I felt compelled to blurt out the answers to all the questions that he didn't bother to ask that for years he's always asked: any pain, shortness of breath, coughing, headaches, neuropathy, muscle weakness or any new or persistent symptoms? All he could muster was a perfunctory, "Do you need any prescriptions filled?" And then the semi, out-of-the-blue-bombshell: "Are you familiar with Palliative Care?" Followed by the offer to refer us to a book that he thought we might find helpful/useful. Helpful? Useful? I didn't say it at the time because the entire appointment was so odd and almost impersonal. But WHAT?! Palliative Care? What are you talking about? He has never brought up palliative care before? (Although way back when, he had given us a brochure entitled "Final Wishes.")
You see, we know about palliative care. We've attended multiple conferences organized by LUNGevity, "the largest national lung cancer-focused non-profit in the country," where palliative care doctors often have spoken. Palliative Care is not hospice care but it's a transitional level of care to be sure. If I'm not transitioning, I wish somebody would have told me, and not by asking about my familiarity with this type of care. In a word, palliative care is a type of downsizing, as best as I can describe its subtleties; separate and apart from hospice care which is, if you don't know it, "the last train to Clarksville," if you get my euphemism (and hopefully someone is meeting you at the station).
But so far as I've been told, I'm not on the last train to Clarksville or any other final destination. In fact, I rarely take the train. Not that being on or off the train matters when one comes to the end of the line. Nevertheless, as I review in my mind what my oncologist said this past Monday, I have to wonder if he was feeding me a line, throwing me a line or just reciting a line that is required of oncologists in their regular communications with their cancer patients, a sort of caveat emptor for long-time cancer survivors who are inexplicably still alive (as evidence of such sentiment, my oncologist refers to me as his "third miracle"). But I didn't feel much like a miracle on Monday. I felt more like a dope. Like I was being told something I didn't realize, sort of a king has no clothes 'something.' It was a feeling I had never experienced before; during or after any of our appointments. Previously, even at the initial Team Lourie meeting in late February 2009 when the hammer came down, I had, though having it in utter disbelief, a grasp of the obvious: "terminal cancer," with a "13 month to two year" prognosis to boot. The particulars of which would be sorted out over the following weeks and months beginning with my first chemotherapy six days later.
And boy were they ever sorted. Ten years and almost six months later, I'm still sorting. Was I just given an updated "terminal" diagnosis/prognosis or was my oncologist merely having an off day? Obviously he knows that his words carry enormous weight and significance and create terrible burdens for his patients and their families. But he can't simply toss out the phrase palliative care like it has no impact. Its impact is huge. It's akin to being hit by a speeding train, the likes of which would prevent one from getting anywhere near Clarksville, let alone being on the last train.
Deb W reacted to LCSC Blog for a blog entry, Some Trek: To Go Where This Man Has Never Gone Before
Although I've had a pretty good run of late not writing much about "the cancer"—to quote "Forrest, Forrest Gump"—the reality is, as you might imagine, cancer is ever present - in your head and in your heart (and for me, in my lungs). Never more so than when your quarterly CT scan is imminent. As I sit and write this column on a Sunday, Wednesday—three days hence—Is what you'd call 'imminent.' Not that there's much preparation; there's not. But with electronic media being what it is, one does receive multiple reminders: text, email, and the occasional call. And even though I don't actually have to do anything in advance, I am reminded nonetheless, in advance, what there is yet to be done: show up! (Apparently, many cancer patients, staff have told me, are not as compliant as you'd expect them to be.)
But it's not the 'advance' or the after that I'm addressing in this column. It's the way before and how a CT's imminence affects one's life. As much as I write and talk/act a good game, living one's life pretending to minimize cancer's presumptive/possible/"prognosed" impact is indeed make believe. Not that I'm a glass half-empty person; I'm not, as you regular readers know. However, there's nothing like a computerized tomography and a post-scan appointment with one's oncologist to focus your attention on the fact that you have been/are living with what your oncologist originally characterized back in early 2009 as a "terminal disease”: non-small cell lung cancer, stage IV (and giving you a "13 month to two year" prognosis to boot). A disease whose initial progression (doctor-speak for growth/movement) eliminated surgery as an option, but one for which there have been multiple lines of chemotherapy, none of which was ever been said to be a cure. In the spirit of that reality, how does one live in the present and plan for the future? (Jeez, that last line sounds right out of one of the Carrie Bradshaw's "Sex and the City" voiceovers.
On the one hand, the one with no sense of reality, I suppose one is simply to go about one's varied business with nary a care or concern in the world. On the other hand, the one with enough a sense of reality to choke a horse, I suppose I am to mark time, count the number of days until my next scan, plan for today and think about tomorrow - but not too many tomorrows as there's no sense getting ahead of oneself or else one will get behind. And if that sounds mixed up, it is. Because for cancer patients "time is a godforsaken paradox." As Captain Katheryn Janeway of Star Trek: Voyager further explained many star dates ago: "The future is the past, the past is the future. The whole thing gives me a headache." And if you do get any headaches, you need to contact your oncologist because in 30% of lung cancer patients, the cancer moves to the brain. A location which presents all sorts of treatment and quality of life challenges. And a manifestation there, should it appear, scares the living daylights out of me. But never mind. Just keep on planning and pretending that you don't have a "TERMINAL" disease. You know, the type of disease for which there's "NO CURE."
Then again, if I do get bogged down by certain realities, I'll be no work and no play - and no fun (neither do I want to be a dull boy). And no fun is no way to live - in the past, present or future, and that's no paradox. So if and when the chips and/or the "chippee" is down, one needs to be thankful for the chips that you do have and for the ones you hope yet to accumulate. Otherwise, you might as well see the cashier on your way out. Life's too short (don't I know it) to live only in the present and not consider the future. And if I don't consider the future, it's unlikely I'll have one. Just because I've now had a past that lasted years longer than I expected shouldn't mean I can't have a future I never anticipated.
Deb W reacted to LCSC Blog for a blog entry, "Come on down!"
Except I was not sitting in the audience for "The Price Is Right" when I heard my name called. Nor was I needing to guess the cost of my infusion with my treatment that day contingent on my guess not exceeding the "actual retail price." And neither were there any of "Barker's Beauties" to wave their hands and showcase what items I would be attempting to price right. No. There were only multiple oncology nurses standing in front of the Infusion Center's entry door calling out the names of the next patients lucky enough to begin their treatment. It wasn't exactly "Plinko," but once inside the Center, the fun, such as it is, really begins.
At least that's the way the activity appeared to me. The preceding day was July 4th so the Center was closed forcing those Thursday patients to be rescheduled to either Wednesday or Friday. As a result, the waiting area was particularly full with patients, along with their family and friends, all of whom are encouraged to attend. In the midst of this crowd, I sat and waited. We hadn't exactly been assigned numbers, but we were assigned oncology nurses and therefore could only enter the Infusion Center with their assistance.
Then, while all of us "waiters" looking at the entry door waiting for an oncology nurse to walk through and call our name, the door lock clicked open and out walked two oncology nurses. As soon as they cleared the door and entered the waiting area, they called out their respective patient's names (unfortunately not mine). Upon hearing their names, the two patients and nearly half a dozen of their supporters got up and moved eagerly toward the entry door. It reminded me of the beginning of "The Price Is Right" when three audience members' names are called in quick succession and implored to "Come On Down!" by George Gray (Johnny Olson, the original announcer, retired years ago) and officially become one of that day's contestants.
However, once inside the Infusion Center, It's dead serious. Your life is at stake, maybe even at risk, depending upon your cancer/treatment, and at this point, you're not playing any more games (although occasionally, you may be guessing the price of things and wondering how it all gets calculated). So you slide into your Barcalounger, hold out your arm to have your barcoded wrist ban scanned and prepare for your hopefully, life-saving infusion, and don't smoke 'em, even if you got 'em.
It's rare that you'll see your oncologist in the Center. Typically, they'll be seeing patients in examining rooms, performing surgery or rounding in local hospitals. But they're always a phone call away should the nurses need any additional instructions or clarification. Generally speaking, once inside the Center, all goes as anticipated for us patients: you're in, you're treated, you're out. And when you're out, new patients names are called and on and on it goes, just like "The Price Is Right," except the program doesn't end in an hour. And just like "The Price Is Right," where there are no shortage of audience members wanting to participate, at the Infusion Center, likewise, there seems not to be a shortage of patients wanting to be treated either. (Granted. it's not exactly the same thing, but you get my drift, I'm sure.)
Cancer is not fun, nor funny, and an Infusion Center is not filled with anticipation of cash awards and magnificent trips. There is however, lots of empathy and understanding - from your support system and from staff as well. But it's the last place you want to be, unlike "The Price Is Right."
Deb W reacted to LCSC Blog for a blog entry, "Extensive Metastatic Disease"
Well, I certainly don't like the sound of that, and I especially didn't like reading it in the "impressions" part of the radiologist's report I received Friday summarizing the previous Wednesday's PET scan. Though hardly a surprise given a thoracic surgeon's description of my original PET scan 11 and 1/2 years ago: "You lit that thing up like a Christmas tree." Still, I would have rather read something a bit less ominous. But I don't suppose being diagnosed with two types of cancer (non-small cell lung stage IV and papillary thyroid, stage II) lends itself to a "bit less ominous." Besides, "less ominous" left the building in late February 2009 when I was first diagnosed with a "terminal" disease: non-small cell lung cancer.
Not to make light of such a heavy dose of reality but, as Tom Sellick says on his recent television commercial for AAG: "This isn't my first rodeo." And neither is this statement of fact from the radiologist the first less-than-encouraging news I've heard and seen. To invoke Jack Palance (Curly) from "City Slickers" (1991): "I **** bigger than that." I've been living with a version of these words for 11 and 1/2 years. Tell me something I don't know.
Nevertheless, I'll find out what it all means soon enough. Though it might be a bit of a re-hash from a few columns ago stating that since all the tumors in my lungs can't be biopsied, practically proceeding, my oncologist will never know for certain exactly how much of what type of cancer I have. And since one medicine - from what I've been told, can't treat both cancers, life expectancy, treatment protocols, etc., are likely unclear at best. Presumably, we'll treat the cancer which is most prevalent, most aggressive and most treatable/curable? I can only hope that as I sit and write this column, two days before my surgical lung biopsy on Monday, seven days, approximately, until I hear from my oncologist, I'll be able to compartmentalize the worst case scenarios - all of which are out of my control anyway, and try to live life as normally as possible and avoid any rabbit holes of gloom and doom.
Right now, this is just another blip on the cancer radar that has been "blipping" for more than 11 years. Generally speaking, the medical feedback we receive almost always sounds mediocre (and I don't mean fair to middling either). And it never sounds worse than it did in February '09 when I initially was diagnosed and given a "13 month to two year" prognosis. Unfortunately, having outlived my oncologist's expectation by upwards of 10-plus years doesn't guarantee me any favorable news. That was yesterday (yesteryear, actually). This is today, 2020. However, much has changed/evolved in the cancer-treatment world. There have been more drugs approved for the treatment of lung cancer in the last few years than in previous multiple decades, including the introduction of an entire new class of medicine: immunotherapy. It's not exactly game and match, but it is night and day.
Still, it's premature until I'm re-diagnosed and placed in a new protocol and see the results - in future CT scans. This pending biopsy may be the storm before the calm or vice versa, quite frankly. As I await results, my glass remains half full, as always. I just have to hope that while waiting for the cancer business to become clear, I don't get so thirsty/anxious that I empty my glass. That wouldn't help anybody, especially me.
Deb W reacted to Tom Galli for a blog entry, 10 Steps to Surviving Lung Cancer from a Survivor
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.
Deb W reacted to Tom Galli for a blog entry, My Thoracic Surgeon Comes to Dinner
I've survived a lot of medical treatment. The most sophisticated and creative was while in the care of an extraordinarily gifted, courageous and talented surgeon. We invited him and his wife to dinner to renew our acquaintance and review the bidding. The dinner was memorable.
I could launch into the details of my 8 surgical procedures performed by this brilliant man but that story is told elsewhere. Of more interest to this community is what are the indicators of brilliance in a surgeon? Unlike general medicine or oncology, surgical encounter time is brief. One can ask about reputation, but thoracic procedures are risky and outcomes are variable involving heart, lungs, vessels, transplants and a myriad of complex procedures to the engine compartment of the body. Using my surgeon as a model, it might be useful to develop a means test of thoracic surgical competence that a survivor might use to evaluate suitability during the span of a short pre-surgical consultation. Here is my list.
Is your surgeon friendly? Is this man or women one you’d enjoy having a coffee or a beer with? Does conversation flow easily? Does the surgeon respond to your elements of conversation? Does he or she listen? Do other practitioners or office staff enjoy being around him? A surgeon that is pleasant is likely to be a surgeon that is sympathetic, benevolent and a true believer of the tenants of the Hippocratic Oath. Is your surgeon inquisitive? Surgery is a melding of art and science. The art is “what” to do and the science is “how” to do it. Thoracic surgeons are a small tribe that practice in a complex environment. When something new is discovered, your surgeon should be very interested in investigating it for application. If your surgeon already thinks all the “what” questions are answered, find another. Is your surgeon respectful? In your pre-surgical consultation, you ought to feel like the important one. Your medical condition needs to be acknowledged as important and your feelings, fear, anxiety, and uncertainty should to be taken into account. If your surgeon doesn’t use your name or look at you or attempt to help you relax during the consultation, find another. If your surgeon makes a grand entrance, surrounded by a posse of assistants, and talks to them about your case, find another quickly! Is your surgeon decisive? At the pre-surgical consult, there is one key decision to be made: operate or do not operate. This ought to be made then and there. If your surgeon feels the need to discuss your case with others, find another. There is so much uncertainty in lung cancer surgery and each encounter will require a decision. Your surgeon needs to come equipped for making decisions, alone. Is your surgeon acutely intelligent? Compose a non-surgical question on the surgeon's interest or hobbies ahead of the consultation. Listen for passion and detail that indicates sincere interest and evidence of accomplishment. Intelligence starts with curiosity and leads to ability to assimilate knowledge and use it in cross functional ways. A surgeon with a photography interest would know depth of field (the f-stop setting on a camera) is analogous to layers in skin, tissue structure, and visual focus precision. Photography concepts relate to surgery yet it is a diverse field of intellectual pursuit. Avoid those who are interested only in surgery or who say they don’t have time for anything in their life but surgery. We had a wonderful reunion made even more special by the attendance of my daughter, son-in-law and granddaughter. My daughter met my surgeon 15 years ago while I was near death. She is also a beneficiary of his skills. Ten years after my surgeries, I asked my surgeon to help find a skilled brain surgeon to remove my daughter’s complex meningioma. He moved heaven and earth to do so. Add compassion to my list.
Stay the course.