Thursday, February 14, 2013

Prelude to a Dream

If only this were a dream... 

Albiet one that I cannot wake up from, though it warrants examining, as some have inquired of me to share what, if any, the warning signs or even circumstances which existed prior to my life being thrust into the throes of the tumultuous chaos that is a cancer patient's life and journey through the unknown. ***In spite of the most recent development in my situation, i feel this is still important to share so that others have at least a little insight into what led or may have led me into the point of being an advanced stage; Stage IV fighter with no chance it seems to have headed it off at an earlier stage.** Recent scans to determine if the painful swelling and distention of my abdomen since the colostomy surgery in early Dec 2012 was ascites; a build up of fluid in the abdominal cavity due to irritation caused by the primary tumor and liver function disruption not only showed the lack of fluid to be able to removed to relieve the uncomfortable condition, but revealed several masses on my liver itself, one of the three measuring about the size of a golf ball, therefore being the culprit of the swelling. Nothing they can do they say, except increase the pain medicine. That's not ok with me. They know I am young and still want to fight and be informed on all aspects of my disease, though Hospice is in the palliative care business, not the interventional treatment business. Instead of biding my time and staying as comfortable as possible, which they are great at doing, I feel that more aggressive steps are needed to be considered at this point instead of just laying down and letting it win and slowly take me further down the rabbit hole. It would just be nice to know what that means  forme to do. I'm searching for clinical trials again since the answer I get from every consultation is "try the last type of chemo, add this booster drug, then maybe this new drug on the market will be a candidate for you to try as a last resort." They all spell the same results that I decided against doing following the recovery from radiation treatment back in September 2012; I didn't want to put my body through that again with the flimsy guarantee that it may only keep me 'stable'; prevent further growth, and only extend life-expectancy but a mere 1.2 months, but with the side-effects making me feel 10x as worse as I already feel on a daily basis, it didn't seem logically worth the gamble. Now, maybe, give it a shot? I don't feel much different about trying it, but is it worth it if stable means staying on it long term to keep me there and feeling crappy the rest of my life instead of 'feeling' stable for the most part but knowing that it is being allowed to spread and progress. I'm between a rock and a hard place. I just need that rock to be my foundation and my strength.

Getting diagnosed with Stage IV cancer at such a young age and with little to no warning in the way of symptoms or major medical concerns that raised any flags was both bothersome and in and of itself, just plain mind-boggling. Everyone I speak with on this topic rightfully wonders aloud if there was anything that was happening in my life prior to the diagnosis that would have given me any clues or warning , but unfortunately as is the case with i'm sure the majority of cancer patients, there's simple not just one thing to peg as the cause.

In my case, heredity (the prevalence of cancer on my dad's side of the family), possible exposure to carcinogenic material in my air force years around the aviation industry, high stress at work environments overseas, working long and constantly changing shift work hours, not allowing my body to ever really get on any normal sleep pattern, a diet that probably lacked enough health fresh natural foods and vital nutrients as hard as I tried if military chow hall food counts as real food, I still tried to eat healthy, as well as skipping meals due to being too busy and a preoccupation and perfectionist mentality towards work; these all contributed to some degree or another to the natural breakdown in my body that allowed the cancer to manifest itself. Or it could have been none of these things. It just happened, though i'm sure some of these played a significant probability of allowing the cancer to develop from the substances we are all exposed to that lay dormant or latent in our systems and just need a weakness in the system to allow it to thrive and come to life so to speak. 100 different people could have experienced the same exact factors as me over my lifetime and not have a trace of cancer. Who's to know. Maybe my exposure to high-altitude mountain climbing triggered a lack or oxygen to my system tied to the intense physical stress of throwing myself at a demanding climb though short lived, could have triggered something. There are a million what ifs that it doesn't do anything but give you one more thing to worry about that you can't change, so early on I gave up on that thought process and  now just focus on what is and take each day as it comes. 

I did however, come home from my last stint overseas on a solo trip of 6 months for my new job at the time, and sought out a primary care physician in our new town of Chico where we had bought our house earlier that spring but wasn't around long enough to establish a primary Doctor at the time (again since I didn't feel any major health issues that warrants the immediate need). Though later that fall when I nearing the end of my assignment, I started having to worrying symptoms that I would seek a Dr.s consult for but didn't trust the doctors or the healthcare system in the country I was in, so waited until I returned to Chico and started my new position at work full-force, still having the symptoms, sought out and found a Dr. of good reputation and voiced my concerns which led to getting a colonoscopy scheduled. (**censor warning: the following is described in detail for the purpose of sharing the exact details of what I experienced and led me to seek care for others to be aware of and to serve as an example of a warning sign that should be taken seriously as a potential precursor to a much larger problem**). For several months before returning overseas, I had been noticing significant changes in my bowel habits, namely blood; light streaks to moderate amounts of bloody mucus in my bowel movements as well as the consistency of it changing to a consistent softer mushy consistency like chocolate frozen yogurt (sorry for the food analogies, but was the best way to describe it to the Doctor) and the size was consistently smaller, like sausage links (again sorry to ruin these foods forever for those reading), though in my case, this was due to the fact that the existing tumor was already present and restricting the size of stuff passing through. This led me to the Primary Health Care provided I had chosen and had the colonoscopy performed, which in normal circumstances isn't prescribed until someone hits their 'Golden Years' at 50. It is highly recommended therefore for anyone with a family history of anyone who's had colon or colorectal cancer, for family members to have a colonoscopy performed 10 years prior to the age that the family member was diagnosed and should be screened irregardless. In my case that means my children will have to endure that necessary unpleasantness at 21, but for a very good reason. The screening involves looking for tiny polyps (mushroom like growths that indicate the precursor of cancerous growth, but can be biopsied to confirm malignancy). Several of my close family members since my diagnosis have done just this to ensure they are clear of the risk. My colonoscopy of course discovered the already growth of a full size almost circumferential tumor that was biopsied and confirmed malignant and already spread to nearby lymph nodes almost that same first surreal day. 

I wish there were more definitive warnings I could share that would educate and arm others with good ways to avoid what I now have to endure, though awareness is the first step and the key is listening to your body, even for the most subtle changes, is really the most important piece of advice I can offer. I lived and worked in a stressful environment for a long time, and even the little things that might have been warning signs could have been overlooked, ignored, or chalked up to how I just how I was living or treating my body. It is important not to ignore the little things, they could make all the difference. Even if they're not of immediate medical concern, it's exactly the environment we put ourselves in and the way we live and more importantly eat, that could be the cause (and the cure) of most major illness that develop because of those factors. Changes, any, in your digestive system, warrants taking note of and is probably the most common factor that could indicate the start of a problem but is also probably the most overlooked or ignored. Bring it up, don't ignore what your body is trying to tell you. What we put into our bodies is what we get out of it, literally and metaphorically. If we eat like crap, drink too much, smoke, don't get proper sleep, stress & worry, don't exercise; our bodies reflect all of it. Cancer is no different. Maybe being the penultimate consequence of all, it is truly how we treat our bodies that is the best defense we have. I felt that I lived a pretty healthy life, I ate fairly well but was way off from the truth of knowing what I know now on the subject due to the exhaustive research Alysha has amassed to develop her expertise in the field of nutrition, alternative medicine, diet and eating naturally and raw, spending countless hours since my diagnosis to shape the changes to make our home a healthy and chemical free one to the health of our entire family. The changes are obvious and logical how much a role our diet plays in not just our general health, but in disease prevention and fighting it. Even now i'm guilty of straying from it. Partly because some of the medicine I take acts as an appetite stimulant, which in my case has been a good thing; to gain back some of the weight I lost during chemo and radiation treatments. I weigh more than I did when I began this journey, except that the things my body craves: carbs & sweet stuff, gives me the kind of weight i'd rather not have, but not being able to be active and have it toned, I don't really mind. One of the steroids I take makes my face poofy (moon-face) and has been causing minor headaches because it's pushing on a piece of cartilage on the side of my nose that must have gotten dislodge (during a minor altercation at a time and place with people I won't mention here on return from a deployment layover where some coworkers in the distinguished crew-chief occupation got a little rowdy), but has swelled to the point of making my voice nasally and is threatening to interfere with my vision in my right eye. Anyways, my appetite  is ferocious at times and I just want to eat whatever I can get, so trying to stay eating healthy is a challenge. But just doing the simple things like cutting out dairy, minimizing or substituting sugary snacks and highly processed foods with healthy alternatives are a good place to start. Kind of being past the preventative stage, it's still vital to arm my body with the right tools it needs to do what it was designed to do and fight from the inside out naturally. That was a big factor in deciding not to pursue the next type of chemotherapy that is available for traditional treatment options, though it can't guarantee any measure of success that we've yet to see from pursuing any of the previous regimens. 

So without some magic ball to see into your future, you have to be your own advocate and make note of changes in your body that concern you, don't ignore them, and especially if you have family history of any disease, get screened yourself to ensure your own health, and treat your body well, and it will treat you well! Even as mine deteriorates, I feel that because i'm still young, my body, which some help along the way, will continue to fight and i'll be 'stable' for some time to come if I follow my own advice, I just wish we knew more about the enemy to ensure defeat. I've been reading snippets of Sun Tzu's 'The Art of War' viewing cancer as the enemy in all analogies to arm myself with a mental insight or mentality of outwitting the enemy. In this case running from it doesn't work as well as moving an army to flank another, but it serves as a platform on which to perceive a battle that can be strategically fought whether imaginary or real. Dream or reality, our physical wellbeing relies on us and what we expose ourselves to. Heed the warnings and don't wait to address concerns, no matter how small. You are your own advocate, no one else in the health'care' system will put forth the effort you deserve and often need to delve into an issue to find the right answers because the caring part of it has been lost. 


Sunday, February 3, 2013

Sands of time

I think in life, we all feel like we're trying to climb some sort of mountain, metaphorically, of trying to make it to the top, to achieve our goals, or simply to feel like we're in control of our lives, our destiny, or fate; 'just trying to stay on top', as a general, human instinct. Sometimes these hills we try to stay on top of or are in the process of climbing back up when something knocks us down, can feel like it's made of sand; every step is hard earned, every step seems to disintegrate beneath your foot as you slide two steps back down for everyone taken and once on top, if you can scramble that far, it feels unsteady and as if you're sinking back down already as if the goal of reaching the physical 'top' was merely an illusion or a trick set to get your hopes up once reached.

I feel myself there right now. I've continued to climb this slippery slope time and time over through my journey with cancer. Have stood on top, feeling not that I've conquered it, but at least have come to a stable plateau where it's bearable and I can deal with on a day-to-day basis fairly reasonably with the medications, supporting medical equipment I now have at home (adjustable hospital bed with good mattress and foam overlay cushions, respirator machine with nasal canula to assist when I am short of breath, travel oxygen bottles and a transport wheelchair for extended walking excursions) and of course the love and support of my family. It's a daily struggle nonetheless. I am stable in most senses; physically, mentally, emotionally & spiritually, though I stumble through some days on any or all of those fronts as the nature of the beast chooses to test me at that given moment. I have an actual 1-hour sand hourglass sitting on the entertainment center by the tv in our living room. It only ended up there in particular for decorating  aesthetics. I find myself flipping it and patiently watching the tiny grains of sand slip through the funnel and wonder in comparison to my life if I was on the side losing sand, or gaining it. The obvious answer isn't a mystery, but to contemplate the side that is gaining, that is also the true reality not just for me but for anyone willing to perceive it as such. Alysha always calls me a sceptic when it comes to saying if I'm a glass half-empty or glass half-full kind of guy. I'd like to say that I'm an optimist, at least that's where my good intentions lie, but I am pretty skeptical about most things and just claim to be a 'realist' instead! It always feels good to be on the side that is gaining something, that's human nature, it fulfills a desire and a need to be 'given' something, not having something taken away. To be on the gaining side of being given time is a rare commodity in our hectic lives, but broken down to the most basic of needs, of survival, time is as much worth fighting for on the most visceral levels as food and protection, the things to sustain basic life and enable all other needs that follow to be prioritized. To be given time is a gift. Climbing a mental hill of sand feels like it is constantly being taken away and looking toward the top of that hill, it makes me pause to wonder if it's worth the struggle to try to get there if it's just going to crumble away beneath me?

Taking that for what it's worth, is not to say that I feel like giving up, though some days I can't help but to submit and just curl up isolated from the rest of the world and succumb to the pain, discomfort and helplessness that often threaten to break my will to remain above it, if only for the sake of my family not seeing me breakdown. But I have been given time, sometimes I wonder for how much longer and if I'm just biding my time until the inevitable. That thought makes me struggle too; am I resigned to the fact that nothing more can be done, am I just waiting to die? We've made choices along this whole journey, about treatment options, about natural therapies, ways to deal with the symptoms and side-effects of the medicine deemed necessary in my case to take, for pain management and for family coping. They all have taken an incredible amount of consideration, research and prayer to know what is right. But there is no right, no doctor or university specialty hospital or treatment center that has an answer for me. I am at the end of the rope of medical treatment options save for the single las t type of chemo that they can offer with a boost of a new drug that is only proven to extend life expectancy by 1.4 months. We decided no to do it because of the horrible side effects and just the process of putting my body through that torture when all the other types of chemo I've undergone did absolutely nothing except rake my body of all my energy to fight it on it's own by poisoning it and putting stuff in me that even if it worked to shrink the tumors, would not eradicate them totally and would only open the door for the actual chemicals used to cause, yes cause, more cancer even of a different type than I'm fighting now, in the future. We decided it was not worth the risk and self-mutilation with such a small margin of success that anyone could say it would provide. We've opted for home health care through hospice instead, to help manage the symptoms I currently have, but not to treat. I am comfortable for the most part, have the pain control under a good regimen and a team of nurses and a doctor who still consult with my oncologist for care when the need arises but mainly they are here for palliative care; to keep me as comfortable as possible as I face the road of the 'terminally' ill. That said, my case is considered 'stable'. I can't work, can't drive, can do much along the lines of being physically active, walking across the house sometimes is enough the leave me winded as the oxygen exchange, meaning basically all lung function,  on my left lung is diminished or just completely gone. The pain and constant tightness in my chest due to the masses spread out over both lungs as well as pain from the primary tumor down below are ever present but manageable most of the time, yet enough to cause moderate anxiety on top of it all.

Like the mountains I've loved to climb in real life; the snowy peaks that called to me that I can no longer attempt and have had to give up, trying to perceive my situation now as a sandy hill, to always be trying to reach the top of; I must also give up. Not for reasons of futility and 'laying down' to let what now seems like the inevitable just take me, but I am going to, and must, perceive my journey as merely a walk across still sandy ground, but level. Still trudging through hard land to cross, but a walk that is nonetheless manageable, with my family by my side and sometimes the tracks will show only a single set of footprints that won't be my own, but those of another figure carrying me when I am too weak to continue on my own.


Thursday, January 10, 2013

For every season...

~From the mind-folio musings of Pete~

"And a time for every purpose under heaven", the Byrds  song continues. I know many follow this blog as their sole insight int our journey and it has long been neglected, so I apologize for the lack in continuity in being able to keep up with us short of short quips on Facebook, very few of which are my own. With the myriad of thoughts, struggles & rollercoaster of emotions that take a daily or more realistically moment-to-moment fluctuation on my mind and body, even more and more  frequent mini-anxiety attacks, my thoughts will only portray the incongruity of my emotions as they would come out in writing. We've graceth and a half, so our house and routines have been in a bit of an upheaval for a while and has no just settled back down after the holidays and everyone goes back to their 'normal' lives, as we're left in the tail-wind spinning in the eddies of our not so 'normal' lives. That's led to some own upheavals and changes even to our little day-to-day life of managing the normal 'facing a terminal illness' life. We had a lot of small mini-milestones to look forward to since the last posting, beyond the visitations of family and the planning of the 'Living Memorial' party which went off extremely well on many fronts, the Saturday following Christmas; we had a grand Disneyland trip scheduled in mid-December which was side-lined by a last-minute surgery I had to implant a colostomy bag aimed at belaying many of the bowel issues i'd been struggling with. That typically straightforward procedure came with it's own set of complications that are still slowing me down and adding new trials yet alieved others. Small goals are all I can set now as the smallest of trips, car rides, or even small exertions around the house leave me short of breath and taxed of all energy. Just today, the hospice nurse in formed me that all lung sounds on my left side (where the largest tumor and fluid build up had been) are completely diminished; meaning almost no oxygen exchange is occurring on that side. Since the placement of the catheter to be able to drain fluid from that space back in October, there has been vitrually no drainage, meaning that it caused enough scar tissue that the fluid has stopped accumulating or at least it drains properly on its own. That's great but I still have this stupid tube stuck in my chest that is in some way or another irritating enough on a day-to-day basis. So anyways, i'm almost constantly out of breath, coughing, or feeling like i'm constantly getting a great big bear hug, amoungst things everywhere else in my body.

Speaking with a friend who has and is undergoing a similar yet wholly different case of colon cancer, he mentioned that our 30 year old bodies are undergoing the breakdown and function loss of 80 year old men. That coudn't be more the truth. I take it for what it's worth and what it has to be and deal with it, in all it's frustration, embarrassment, and relinquishment to a destitute frame of mind, it begs the question: what do I do from here? Just wait?... My thoughts seem best prepared to tackle that next question in the dead of night night when i'm awoken even in the midst of sleep inducing drugs with a maelstrom of thoughts invading my slumber. That and my ceaseless craving for sweets even at 2 a.m.

There's an ending tumult as I said, a whirlwind of threatening ebb and flow of emotions that assaults me or at least passes tauntingly close by daily, any of which could sweep me away to anger, malaise or plain destitiuteness. But lately I care to give any such claim; that instead I just am. I exist. If asked if i'm doing ok, there's an instant desire to fire back what that is?! Relative to what pray-tell?! Though that isn't fair to the genuinely concerned who don't exactly understand what that simple concern could elicit. I just am, nothing else really matters at this point when I sit under a streaming hot shower and feel any cares or worries i might have previously had about the world in general; nothing holds the same meaning or priority any more. Alysha will be the first to tell you that I am no longer the most timid or modest person whether in public or elsewhere, i just don't have the patience or tolerance for things I used to just let roll off my back. If we are getting sub-quality service at a restaurant and the coffee is pale and warmed over, I don't let it slide anymore, I demand more for the time I feel I have left and deserve something out of it even if it's a fresh cup of good coffee. That's not to say that nothing at all matters to me anymore, that I go through my day in a haze, though sometimes am forced into that state when sleep eludes me, it's just the same things don't give me the same concern nor can I find the patience to spend my time concerned with things other than the wellbeing of my family. I can be targeted by an onslaught of doubt and misdirected concern from others who simply can't grasp that place that I, we as a family, as a married couple, find ourselves on this walk in our 'journey', how we find ourselves at peace with it. Whatever that irrefutable logic tells us and how our faith in God's will places a higher understanding of trust in Him gives us peace, one that can't be related to those who's eyes and hearts cannot be opened or at least exposed to the same degree of grace we have been blessed with by finding ourselves where we do now.

So whether my days find mw walking along the RxR tracks, wondering why it's worth continuing on just waiting for the inevitable with no purposeful direction or aim in the dwindling days, just waiting for what's next, or I find myself soaring in an unspeakable beauty of peace and tranquility, brought closer to God's presence in a rebirth from the ashes that threaten to smolder at my will and the peace i've found, I simply am. Time and God's will are my soul's companion on this daily ride. But this is a very visceral part of me at the moment. Of course other things matter and I still find joy and interest in daily life, though it takes considerable effort to overcome the dragging weight of this core that can swing from one end of the spectrum to the next at any given moment.

I am currently attempting to put thoughts and chronicles of my journey down in a different manner than narratives such as this and hope in time, if it amounts to anything significant, will be a different kind of legacy I may leave, not just to tell my story, but to enlighten, inspire and educate how a life such as mine can shift from ordinary to what may feel insignificant, but maybe just maybe, share a different kind of story than all the others that tell of struggle and strife brought on by a tragedy or trauma. These stories are run of the mill once you are introduced to the genre, i just hope I have something more to offer that may make it worth the read. It's another line on my short list, so we'll see what may be, may be; que sera sera.