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Thoughts on "incurable, inoperable"


recce101

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Some 2 weeks after release from the hospital with a Stage IIIb NSCLC diagnosis, I sit twiddling my thumbs awaiting further healing of my 7-inch thoracotomy incision so chemotherapy can begin. Since I took care of critical legal and financial details before going in for the surgery, including a sealed letter to loved ones "to be opened only upon my demise," I have an unaccustomed amount of free time for reflection and am wondering why I'm not more worried about what's going to happen in the next few months. Friends have remarked that I seem so relaxed and unconcerned. So what's going on?

Is it all an act? No, I tend to wear my feelings on my sleeve and learned in college that p-o-k-e-r (had to write it that way to bypass a LCSC security feature) is not my game. Am I the brave, heroic type, ready to jump into the fray with no thought of life or limb? Hardly. While it's true that I flew 100 photoreconnaissance missions over North Vietnam in my single-seat RF-101, the motto "alone, unarmed, and unafraid" was only two-thirds true for me. Do I have a fatalistic streak? No. Am I tired of life, ready to "hang it up"? Definitely not. Do I have a deep, abiding faith that carries me through, as others have described in their own battles with cancer? Not in the same way. I'm not religious in the conventional sense, but I do have a spiritual side and an interest in metaphysics. I believe all things are connected, and that amazing things can happen when one taps into channels of communication which are beyond everyday human experience. I think our golden retriever understands this better than I -- what else would explain why those big brown eyes have been studying me so intently the past several weeks? Do I have it all figured out, and know what's going to happen at so-called "death"? No. Does anyone?

Perhaps the answer is not so complex. Maybe it's something as simple as realistic expectations. What do I mean by that?

Shortly after joining the LCSC, I adopted the slogan "Ned [my nickname] wants NED [no evidence of disease]." Certainly that's my ultimate goal, and others who post here have achieved it, but at age 71 I recognize that I may not be able to reach that point within the lifespan built into my genes. So what's second best? How about effective relief of symptoms and reasonable control of the wayward cells roaming around my body, so I can get on with the rest of my life without being unduly hampered by cancer? Some would call it "living with cancer," or "dying with cancer but not from it." It's also called "palliative care" by some, but I don't use those words because of a terminal connotation that may not be deserved. Whatever it's called, effective management is much more achievable than a total cure, and for me, at age 71, is certainly "good enough."

I think many of us focus too much on words such as "incurable" or "inoperable" and are really thrown for a loop when cancer is described to us in such a manner. Look at it this way -- don't all of us have one or more "incurable" conditions which caused us much concern at one time but which we hardly think about today? As an extreme example, I have a friend who became a quadriplegic as a result of an accident. He had a very difficult time at first, but now drives a car with specialized controls, has married, is a successful businessman, and seems to be remarkably happy and well adjusted. Or consider those who have been permanently maimed in war but have gone on to positions of national prominence and leadership nevertheless.

For a personal example, while I was still on active duty with the Air Force I was diagnosed with glaucoma, an incurable eye disease which is the second leading cause of blindness in the world. Fortunately, my condition responded well to eyedrops, and with FAA approval I was able to fly as an airline pilot for 10 years after retiring from the military. Today I still have excellent vision, continue to use the same eyedrops I've been prescribed for 30 years, and hardly give glaucoma a second thought.

As another example, 12 years ago (several years after I quit flying) I became afflicted with Meniere's Disease, an incurable inner ear condition with no known cause that progressively destroys the hearing and balance functions of one or both ears. The first few years were very rough, with totally debilitating vertigo-nausea episodes occurring with no advance warning in inconvenient locations such as banks and computer stores. Today, the condition is still limited to one ear, I have medications which keep the vertigo and nausea at bay, and the brain has learned to essentially disregard the faulty signals from the "bad" side. Hearing is very poor on that side, and our family has needed to make some lifestyle adjustments to accommodate my residual limitations, but I no longer feel unduly hampered by Meniere's.

I view cancer as the same sort of challenge. While Ned wants NED, Ned may or may not actually attain NED, but Ned expects and intends at a minimum to "live with cancer" with the emphasis on "live."

Aloha to all.

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Ned,

While none of us here can guarantee you NED, I personally can tell you I think you are AWESOME!!!

Thanks for sharing this with us. Especially now when there has been so much sadness, your positive attitude and optimistic outlook are like a breath of fresh air.

I wish you ALL the best, and yep, NED too!

Hugs

Chris

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Ned,

Thanks -- you sound so much like my husband. He never has gotten angry or been down (unlike me) about the disease. He is as calm as still waters and almost has an Alfred E. Newman "What me worry?" attitude. He remains an inspiration to me and just keeps going treatment after treatment. I wish I had half the gumption he does.

Thanks again for your thoughts as I needed some serious centering after all the bad news lately.

Best of luck to you,

Welthy

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Thank you Ned, for my Dad.

I've been trying to explain my fathers own reaction to alot of people without truely knowing the right words. I certainly got a few good statements from you. It's hard for me to explain my acceptance and support for my Dad's daily attitude to the family. I'm told I should tell him to rest, and to book appointments all over Gods creation for a cure! I won't do that, I see my Dad's point and can't say I wouldn't feel the same in his shoes.

It's been an emotional hell for him being a 20yr Manic Depressive. Alot of those days were not good to him and he dreads remembering and how many times he was forced into reliving them. Medication has been is partner in life all this time, and more of it for the side effects. Then the heartattack and even more medication given. Now this ...... and so overloaded with other med's his body just can't have more! He was pleased with that, because he's just plan and simply sick of being sick! Only a few of us around him understand that, others think he's just in denial.

His schedule hasn't changed, or the weekly card games, playing pool and meetings. He doesn't want them to change either. He hasn't said the phrase "living with cancer" but I know that is what he's doing. I personally think he remembers my Mothers words of "ignoring it won't make it go away, but it will stop it from ruining your day." Of course that was usually her coping with his Manic depression episodes. But I think it suites the situation just as well.

Thank you for your wisdom,

Tammy

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Tammy:

Thank you so very much for your post. Sometimes we have no idea what effect our words may have on others. What may seem obvious to one person and hardly worth saying can have a lot of meaning for someone else -- that's the beauty of a site like this. Some of the messages I've read here and saved in my "keeper" file may have been hurriedly written by the author and considered to be quite routine by most readers. So I know exactly what you mean. I thank you for letting me know and wish the very best for you and your dad.

Aloha,

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