Saturday, June 30, 2012

Labyrinth: Misdirection in cancer care

Seven months ago, I was diagnosed with Stage 4 cancer. Since then I feel like i've been thrust into this maze, one with many paths and levels like an M.C. Escher drawing where it deceptively intertwines with itself with gaining a higher level only to find out you're right back where you started. Maybe 'Chutes & Ladders' is more an accurate depiction. This maze may have no way out of it. At first, we took the standard advice of the oncology doctors, referred to by my Primary care Doctor, who then referred us to a surgeon and so on. That lead me to taking a backseat approach to my treatment: I was just along for the ride. I didn't have any control over what would be happening to me and was not informed enough to take control to make decisions for myself and not heed the Doctor's every inclination. The more we went on and began to explore our options by seeking out, second, third and fourth opinions from elite hospitals such as Stanford, Cancer Treatment Centers of America in Phoenix, AZ, and now Dana Farber Cancer Institute in Boston, Mass. All with the same results (though we're still waiting on a consult at Dana Farber); we can only do chemo, we can't do surgery, you're already too far along, lets talk about keeping to comfortable... They think and act like there's nothing else to do for me but to palliatively treat my symptoms and ride out the storm.

Our approach and growing concern lead us to seek natural alternatives. As Alysha has written, i've decided to go along with a plan that now is overloading me with unnecessary supplements and prescribing therapies to do at home that are going to costs us thousands of $'s more out of pocket beyond the high price that we've already paid to follow his prescribed regimen. We've now second guessed ourselves and may be following the advice of a local naturopathic Doctor that would start me out more slowly to help my body regain it's strength and immunity at a better pace then treat with her own prescribed therapy.

There's someone waiting at every turn of this maze, waiting at every dead end to offer their greatest breakthrough protocol and ready to denounce any other's approach to tell you that they are wrong and would kill you if you followed their path. Miracle workers selling their own wonder cure, superfood, herbs, or teas, people who would take advantage of those in desperate times, who seek answers but find only empty promises. I've continually sought out the ladders scattered around this maze, to rise above all the confusion and get a clear view of the entire situation only to see the true extent of the mess that lays below. Then taking a step in any direction at that point flings me back down into the depths on a chute to a place that leaves me even more confused and lost than before. Going all natural and not following the advice of the Doctor for what to pursue next is hard as the decisions are all up to you and there's too much information to sift though, much of which is conflicting or contradicting in nature. What leads you to follow one and not another is not taken lightly, especially with your life on the line. Seeing a real person firsthand to discuss options and issues surrounding treatments out of the norm helps immensely. They can discuss your doubts and calm your fears over doing the right thing and really take control again to guide you through a a set path with tangible goals to reach and a clear end in sight. There are still many paths to explore to make sure we don't overlook any possible solutions; Leave no stone unturned.

As this goes on though, my physical condition is declining. The pain level has reached higher thresholds that all but incapacitate me for hours in the mornings most days. I drag around in a state of extreme discomfort full of body aches and sore joints that make me anxious and nauseous still. I keep getting told that it's still too soon for an major affects to be had. But what happened to the promise of being pain free in 10-days (but you don't get your money back)? Some deep realizations have confronted us lately that I don't like to ponder too long but are necessary to address. Though i'm strong and am an anomaly to some who see me still functioning, I may not be around for long. Though we're still pursuing all avenues of natural and conventional treatment, it's late in the game to be throwing any and all conjured cures at it. It's advanced and still advancing. Though we try to maintain the positive attitude of saying to myself that 'i'm only as sick as I think I am," my body seems to push back and say, "no you're not stupid, you ARE sick!"

Where does one go from here. Does he continue to wander the maze but ignore those who through miracle cures out at you, does he find a bench facing a blank dead end and sit and wait for the answer to present itself? Or does he just conjure up a bulldozer and force his way out of the tangles bushes and switchbacks? But what does that symbolize, how do I turn that simple imaginary solution into a tangible one? This parable yet has a moral, an ending that will teach and guide others from the experience to better direct their own life. But it's not there yet. That lesson has yet to come to fruition to be able to offer it as the powerful end to a story. Mine may not have ended yet, but the journey through the labyrinth should tell people that there is much out there in the way of cures for some horrible diseases, but you have to make you're own path, find that hidden wall in the brush that leads you to the exit with confidence. Getting lost in the jumble of potential ways to a solution can be overwhelming and make you want to stop and give up, jump in the backseat again and let someone else drive your life toward either a cure or disaster. Only you can know the direction to choose and only God knows if it's the right one. Trust in Him and hopefully that bulldozer will appear.


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