ColleenRae 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.
ColleenRae reacted to DanielleP for a blog entry, The Pivot
“You know, I heard that green tea/apricot pits/jogging/apple cider vinegar/kale/broccoli/mustard greens/fresh avocados/yoga/this miracle powder/oil/salve/etc., etc., etc. will cure your mom’s cancer. You really need to try it. It worked for my cousin’s friend’s stepmom’s brother. Let me get you the information!”
If you have ever had a loved one with cancer, you’ve heard these offers. You know exactly how they sound. The personal heroism of a friend or neighbor or acquaintance or coworker, offered bravely to your face, can feel so affrontive and offensive. This is especially true when medical treatment plans are not working; when your loved one is especially vulnerable for any number of emotional or physical reasons; or—
wait for it—
when the person offering the miracle cure is otherwise uninterested, uninvolved, and/or unhelpful in the actual caregiving of the patient.
There. I said it. Do not come up to me offering miracles, period. I don’t have the energy to explain to you that, while broccoli is great and we should all definitely get more exercise, they alone are not going to abate the tumors in my mom’s lungs. I don’t have the emotional wherewithal to be polite to you while staring in disbelief that you yourself have fallen victim to believing some scheme.
And if you have not asked if we need anything, or brought us a cake or pie or casserole or loaf of bread in the four years since she’s been diagnosed, then you have an especially low level of credence or gravitas with me in terms of your interest in my mom’s well-being.
If you are a caregiver, you know exactly what I mean. We are on the same page right now. We are all preachers and choirs (or pots and kettles) at once.
But…that doesn’t mean we know what to do about these offers of help. As annoyed or hurt or exhausted as we may be, the fact remains that these are relationships we may need to maintain. Telling folks exactly how we think or feel about their unhelpful “help,” using all the words we want to use, is not exactly conducive to maintaining the relationships. So, we need a coping mechanism. We need a tool.
At some point, off the cuff, in one of my more emotionally raw moments, when faced with one of these offers, I let slip from my mouth: “you know what would actually be helpful?”
And, just as if in a sitcom, I jumped; surprised at my own words; time slowed to a crawl; I turned my head; I looked at my acquaintance, as if in molasses-slow-motion, terrified that she would be offended; and…
She looked right back at me, unaware of my sitcom-terror-moment, and said “what? What do you need? Let me help!”
And my world shifted from a sitcom to a Disney princess movie. Time sped back up, birds chirped, the sun came out, the clouds parted, and music started to play.
Well, that’s how it felt, anyway. Seriously: I was floored. Her genuine interest in helping had been proven, and I realized: she just didn’t know HOW to help, or WHAT to offer, so she had reverted to the only tip/trick/hack that she knew of on the topic.
My point is: as caregivers, we are so consumed by all that we have to do that we cannot imagine anyone in our lives or networks being oblivious to our reality. But, my friends, they are. All of our friends (and relatives and acquaintances and neighbors and coworkers) are understandably consumed by their own realities. When they occasionally can fall out of their own orbits to see what we are up against, it takes a lot of time to catch up with the status of things, let alone to study up on what we might need or not need. This is time that the folks in our networks usually don’t have, my friends. So, if they are aware of some one-size-fits-all grab-and-go panacea, of course that’s what they’re going to offer. These are, after all, unfortunately readily available and highly advertised.
Here’s the point: on that day that the skies cleared and my friend stopped in her tracks to ask what I actually needed, I learned that her heart was in the right place. Her intentions were good, even if ill-informed. And, I would venture to guess, that's the case 9x/10.
And so, the “pivot” was born. This became my tool, and I offer it to you here in hopes that you can make use of it as well.
(If you're a fan of the movie or musical "Legally Blonde," or if you love "Clueless" or "Mean Girls" or anything like that, this can alternatively be referred to as the "bend and snap." Don't ask).
The “pivot” is just the name I give to my blatant usury of the assumed good intentions of the poor soul who offers me snake oil. Here is the script:
Person: “I’m sorry to hear about your mom’s lung cancer. Have you tried making a smoothie from donkey fur? I hear that cures cancer.”
Me: “OH my gosh, thank you, that’s so nice of you to tell me. Hey, ya know, I’m really covered up on Thursday. Can you bring mom some lunch?”
BOOM. Done. Weapon deployed.
(The caveat, of course, is that you have to have a ready-made mental list of assistance that would be useful to you. Frankly, I think this is always good to have, so that you can always respond productively when folks ask what they can do, no matter how they actually ask the question).
Anyway: my favorite part of using the pivot tool?
You will *very quickly* separate the wheat from the chaff. You will immediately be able to gauge whether the person offering the unhelpful help was actually interested in helping, or only being unhelpful after all.
And, at the end of the day, they might actually come through.
ColleenRae reacted to Tom Galli for a blog entry, Acme Elixir - The Miracle Cure
Remember the western movie scene — the debonair dressed pitchman rides into a small frontier town in a wagon whose canvas sides are emblazoned with Dr. Arturo Pedic’s Acme Elixir. He sets up a stage, draws a crowd, and delivers the pitch.
Yessireeebob! My specially formulated Acme Elixir is a sure-fired medicament for any illness. One bottle of this miracle wonder is guaranteed to cure any malady. It is an antidote for ablepsy, ague, apoplexy, barrel fever, biliousness, dropsy, camp fever, consumption, french pox, grip, and even bronze john fever. Step right up folks. Ten dollars buys this marvel medicine!
According to an American Society of Clinical Oncology opinion survey, almost 40-percent of Americans believe alternative remedies alone can cure cancer — that’s right 40-percent believe in Acme Elixir! Oh my, we’ve been teleported right back to 1870 era medical idiocy! Our collective faith in evidenced based cancer treatment has taken a severe hit.
Why? I see a parallel to the campaign against childhood vaccines. In 1998, a fraudulent research paper published in The Lancet asserted combined measles, mumps and rubella (MMR) vaccine caused autism. Innumerable scientific studies proved vaccines harmless, but blaming autism on vaccines was a sensational and compelling newsworthy story, and I remember the stories!
The internet allows the easy creation of a sensational and compelling newsworthy event — a cancer cure. Webpages abound with astonishing survival stories from treatment by this, that, or the other alternative medicine thing. One common thread: all promise a sure cure for cancer. These are very believable presentations with videos offering jaw-dropping testimony bolstered by pseudo-scientific mumbo jumbo. The internet today functions like the 1870 era snake-oil salesman!
When diagnosed with lung cancer, one has but three choices: do nothing, alternative methods, or evidence based methods. Do nothing costs nothing and may work because cancer sometimes stops metastasizing without treatment. Alternative and evidenced based methods cost you money. Evidence based methods have another seemingly unrecognized advantage: outcomes are repeatable. Surgery, targeted therapy, precision radiation or immunotherapy works the same way for a very, very large number of people. Funny how hard it is to rundown actual results for large numbers of people treated with sure cure Acme Elixir.
Stay the course.
ColleenRae 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.
ColleenRae reacted to Tom Galli for a blog entry, A Life Well Lived
A lady with lung cancer passed early this morning. I knew her well. She survived two surgeries claiming a lung, radiation, and many many infusions of chemotherapy. Indeed, her disease was being treated like diabetes or heart disease — a chronic but controlled condition.
Lung cancer did not claim her and death is not a celebratory event, but living a full and meaningful life despite lung cancer is indeed praiseworthy. In characterizing the lady’s life, full and meaningful are an enormous understatement.
In recalling our years together, I am struck by how few times we talked about lung cancer. We shared a disease but talked about stock shows, cars, fashion, movies, politics, family, travel, ranching, tomatoes, and friends. That she would not achieve NED didn’t bother her a bit. “I’ve got things to do and doing nothing ain’t gonna happen!”
I will morn her passing. I will also strive to emulate her lifestyle.
Stay the course.