Tuesday, July 31, 2012

My Chariot's on Fire!

"Failure after long perseverance is much grander than never to have a striving good enough to be called a failure."
George Eliot

     Now I could always quote Frank Oz as Yoda in Star Wars (Episode IV): "Do or do not, there is no try." I recently wrote a poem for Alysha, too private to share here, but it came down to a list of things I feel that because of my illness I have been unable to fulfill to the degree of quality of which I would have liked to. It's not for lacking the desire or spirit to satisfy my responsibilities as a husband and father, rather a degradation of my energy; physical and emotional strength which inhibits my ability to be the man I need to be. The ending of that poem however, stated my clear intention that in light of how I feel that this illness has debilitated me, that I will not give up or give into it without continuing to fight. Having still struggled on a daily basis to get the pain, again both physical and emotional, under control leaves me weak in the knees and weak in spirit. I've been told by several people that it would not be a fault to say enough is enough and give in to the pain and exhaustion. 

There dwells within me still a pretty dark place, an island of despair and hopelessness that wells up within me in times of weakness when i'm overcome by the effects of the cancer. Most of the time it's kept quelled by keeping positive and seeking the good in every moment. However, it is a persistent beast of burden that sneaks up on me when i'm not focused on maintaining a rampart of hope and positivity to repel it. Having continually received the same reply from prestigious cancer treatment centers around the country that "we can't do anything more for you," and having our options continually limited by genetic gene mutations that inhibits this protein or this molecular process from allowing certain treatment methods from being effective, needless to say it gets very discouraging. It certainly lends its hand in leading us to confront the inevitability that I may not make it through this. We've recently discussed with both the medical and radiation oncologists what plans of action remain and it's come down to finishing radiation, which i'm a week and a half into a 6 week round of, to see if it's had any positive effect in either moderately shrinking the tumor or alleviating any of the pain or other symptoms associated with the tumor placement. Then the potential for surgery would be discussed, even thought the consulting surgeon has shied away from being aggressive in pursuing surgery as it won't solve any of the other problems posed by the metastatic disease in my lungs and the still unknown phantom lesion on my liver. We are trying to push for the surgery regardless of his hesitations, even if it means finding a different surgeon, just to eliminate the continually aggravated nature of the primary tumor; the pain, the blockage and discomfort. I want it out. Then, we try the remaining type of chemo that is the last version available to me and then we make the most of my remaining days. 

I've been on the verge, in the midst of unbearable pain and discomfort, of giving up hope and feeling like I would give in, but my mind turns to my children and the pain and confusion that they would be left with in my absence and cannot and will not allow myself to willingly go to that place. Whatever God's plan for me is, whether my chariot awaits to deliver me to my eternal home now, I may be led to it, but with all the strength within me, it's gonna be down for maintenance if I have anything to do with it. The horses may be ready and willing to pull that chariot to the gates of heaven, but if I approach it, it's gonna mysteriously catch fire and be unable to fulfill it's journey. Sorry, not today... I certainly mean that in no defiance to God or to my acceptance of what my fate might hold, though regardless of how much pain I bear, no matter how weak and frail I become, I owe it to my family to fight with every last ounce of will and determination left within me. I've been going through possessions in my garage and my shed to see if we can thin out our belongings to have a yard sale and in going through all the gear I have for camping, skiing, rock climbing, and mountaineering, it pains me to think that I may never be able to use any of it again. My heart and soul yearns to climb and to ski high snowy peaks near and far, but my failing body anchors me to a desolate flatland. One day at a time, I will seek to keep that determination alive that I will once again have the strength to undertake another adventure, even if it would be my last. Just continuing to go through this trail is a daily adventure, but as long as I have the loving support of my family and of friends, I know I can reach that summit. Until we meet again, the best be with you all. Thanks for tuning in!


Monday, July 16, 2012

Blinded by the Light

Disclaimer: this post was a difficult one to decide to share as it is very personal and is in no way intended to seek sympathy or attention, other than your faithful reading, from this or any previous posts. I say this only because I more often than not am writing about the struggles in hope, faith, and health throughout our ordeal. It's hard to write about one's most intimate emotions and trials to a wide audience without feeling like it's to seek recognition. It is not. I hope only to inspire and to share the transformations that have occurred in my life because of this and can only hope it will instill some hope in others who can relate or garner some wisdom from these words to apply to their own life.

This past week has led to some pretty major changes in perspective and 'coming to terms' with some heavy topics touched on briefly in my last post. I started the week seeking solitude and faithfulness (which was the name of my room at the guest house) at the Abbey of New Clairvaux in Vina, CA; a monastery, winery, and retreat center. Being a self-guided retreat I had my own agenda while attending: seek a quiet place free of all distraction to be still and be in the presence of God. The first morning there I embarked on a trek across the acres of orchards and vineyards on the property to reconcile the concession of several topics in my own faith. Lately, I had grappled with the concept of how to truly and fully submit your cares and worries, to give them up to the Lord and declare "My life is yours Lord, I give it all up to you, my worries, my burdens. I submit myself wholly unto your will." It is such a digression from our social habit for American's to do this. You see it prevalently in other cultures; believers laying supine in the middle of the road, praying to God. This is so unthinkable in our culture because we worry what others will think, how they would judge you. I was walking down a gravel road, walnut trees on my left, wheat fields on my right. Not a soul around as I prayed for guidance on how to submit myself to God's will, to relinquish control of this struggle within to plan and trying to choose the correct path to secure a happy outcome from this disease. Totally isolated and alone, I knew the simple gesture I needed to perform to show God my willingness to submit and relinquish control to Him, but I still clung to stubbornness, looking around to see if anyone was watching and I still couldn't do what needed to be done. I walked on frustrated at my inability to overcome petty stoicism. God then presented me with a sign to answer my question and how to overcome my hesitations. A rock the size of a watermelon lay on the side of the road, pushed to the edge of the field when it had been plowed. The rock was me, Peter the disciple, 'The Rock', the foundation of the church. It was scratched by the plow blades but impervious to anything thrown at it. I saw that I must assume my namesake and be the rock, the strength to carry God's will and His word, impervious to the outside whatever they may think or judge about me. In the middle of this gravel orchard road, I lay face down and prayed; committing myself to the Lord and to ask for guidance in lifting all my worries up to Him to give Him control of where this struggle will lead us, to grant us wisdom to make the right decisions. I stood and felt lighter, freer from burdens that had weighed me down. They were no longer of my concern. God will deal with those now. I still face some heavy decisions and tough roads to walk, but now I know that He is with me and will guide and protect me.

When all medical options are extinguished, treatments tested and failed, natural methods abandoned, in that end, I know the Lord. My faith that His will and His plan for me will either be revealed or shall deliver me to the state of mind where I can accept my fate and am ready and willing to join Him in my eternal home. It is an easy thing as a believer to know your ultimate fate and to accept that you will be going home to Jesus; sooner or later, but it leaves still difficult human aspects of that commitment that aren't so easy to accept. My wife and family know where i'm going, even my three year old daughter knows that Daddy's sick, he has Cancer and might be going to live with Jesus soon. She may not grasp the depth of those statements fully yet, but she gathers enough to know most of what's going on. Since that walk and laying supine in the road like a pilgrim on road to Damascus, i've been able to face the possible inevitability of my condition. Doctor's don't want to say the word 'terminal' or 'prognosis' to you, but they start talking around things saying in not so many words that 'there's nothing left we can do for you.' That part is disconcerting amidst the rediculous levels of pain i've found myself in the last few days. The low-dose morphine complemented still will occasional Percoset hasn't even touched the pain at times. They also have the unpleasant effect of making me extremely constipated which in trying to resolve has caused more pain and discomfort that the pain pills were intended to treat.

I was writhing in pain most of the evening last night with Alysha by my side, upset that there was nothing she could do to help me. I sat in the shower for a little while as I no longer had the energy to even continue standing. With the water falling on my shoulders, I had the distinct sensation that someone had placed their hands on my shoulders. I knew no one was in the bathroom with me but I instinctively looked anyway and then hung my head and closed my eyes again. I felt the individual drops of water splash on my neck and my shoulders but again felt the sensation of someone standing behind me with their hands placed on my shoulders as if rendering comfort and support. In that moment, I felt God's holy presence and they were His hands on my shoulders; comforting yet giving me strength and renewing my spirit to know that I would get through this as long as I continued to trust in Him. A while later I was in excruciating pain laying on the bed with Alysha holding on to me wishing there was something else to ease my pain. I was at the point of almost shaking and feeling faint. When I had been standing or walking even just between the bathroom and the bedroom, the pain and pressure that the tumor is putting on my sciatic nerve causes intense lower back pain and discomfort in my leg on my left side, so much to the point of my legs wanting to buckle under me when I stand and put weight on them so I end up hobbling short distances to find a semi-comfortable place to crash and pressure breathe through the next wave. At one point it felt like all my senses were slowly failing. I started getting the tunnel vision feeling even though we were laying in the dark, as if I were about to faint, but this felt more ominous. Things I could hear around the house, the rush or air and the a/c unit running, the sprinkler running outside, all started to slowly fade in volume. It didn't feel like fainting, it felt like my body could no longer sustain me in that condition and was shutting down. It felt like the end. I was literally grasping Alysha's arm to hold on, to keep from slipping away, to cling to something in this life to fight the coming of darkness then light. It may have just been a wave of faintness coming over me, but it certainly felt like a glimpse of what the coming of the end may be like. It scared me. I started thinking that if the pain continued, that tonight could be my last day here, that my body may succumb. The kids were both asleep already but I snuck quietly into both Izzy and Lucas' rooms, laid beside them and prayed over them; prayed for them to grow up strong and to be fair and caring and generous to others and to accept the Lord into their lives. I said goodbye and that Daddy would always be with them even if they couldn't see me, that I will always be there and that I love them very much. I prayed with Alysha as if it were the last time we would lay down to sleep together. The pain had mostly subsided but I was afraid to go to sleep. Awaking the next morning to the sunrise was the happiest I've been to see a new day for a long time. I praised the day and hoped for many more, good or bad, to come without that ominous feeling I had felt the night before.

I am ready to go when my time comes, but not yet. I don't get to decide that, but not yet. We still have a few avenues to explore before we have to make our own distinction as to when enough is enough, that we've extinguished all our options and will then spend our time enjoying life, doing the things we haven't had time to do, as a family, as a married couple, as Christians wanting to make a difference in someone else's life. The freedom of living life unrestrained shouldn't be reserved for the end when your options for staying alive and living a long full life have run out, but often is. Live like there's no tomorrow, or 'live like you were dying' (Tim McGraw). We should all get a chance to do that. Hell, that's a lifestyle everyday for some people. I wish the rest of us could share in it, to re-prioritize and stop giving a shit about all the trivial stuff in life. Things just don't matter as much once you truly see what's most important in life. Again, it shouldn't take a life-altering event to bring  out the best in yourself, to realize that you have the strength within you to be the parent, the spouse, or the believer you thought you were but weren't really living up to the expectations of what a good one should be. Unfortunately it often takes something terrible to happen to make that change in perspective the catalyst for change. It is within you to be a better person. It's within me, i'm still finding it myself, it's not an easy or a short road either, it's an ongoing progression that lasts a lifetime. Transformation isn't about completely changing yourself. People can't change who they're meant to be; their design for their personality. They can change how they look at things and change how they react to them and act toward other people. They can overcome weaknesses and find new strengths. It's a process of perfecting the mold which leads to the ultimate goal of how you will affect others and pass on traits and inspiration to them so that they may be able to mold it into their own identity to then pass it on to another to inspire change and so on. I hope my stories can inspire strength in others, to change maybe certain attitudes toward life or towards others, maybe give new perspective on predispositions otherwise never addressed. I wish I could provide some profound advice to those closest to me to initiate changes that I know are in dire need for some, but all I can do now is to show them how I have found my strength and can only hope that this will inspire them to search their soul too to find the strength I know they have within themselves to fight their own struggles and to win out over them. I am confident I can help those who seek it, but I am still on my own journey as well, so can just be a helping hand along the way. This is what I truly hope.

All the best and thanks!


Sunday, July 8, 2012

Deuces Wild

What can be said for someone who claims to know what their own destiny holds in store? Would you believe them if they could tell you your own? How would you truly know for sure that it's true? The answer to all these questions is: You don't. I fully trust that God has a plan for me and it's yet to be revealed, and may never be. We are not meant to know, but are expected to trust that there is a 'reason for everything'. Not easy to do for us humans who are all naturally selfish and desire control over their lives. How do poker players control the outcome of a game of 'Hold 'em'? They stack the cards in their favor in order of precedence. We try to do the same in our own lives by habit. But what happens when we are dealt a bad hand in life? We try to barter and rationalize and jostle a way to make it work in our favor before 'throwing in the cards' and folding our hand, thus; giving up. Again it's not easy to sit back and relinquish control of our life to let the cards fall as they may. We want the best possible outcome for each round life throws at us.

The latest rounds we've been dealt has definitely made us feel like we are in a house of cards. Ok, enough card playing references, maybe. We've tried our hand at trying to seek the best path in natural medicine. During which we've met or been introduced from a distance to a very broad range of eclectic and eccentric people wielding a cure, well, a treatment at least. No one has or can claim a cure. We've been convinced and then misled, reassured and then let down, informed and then reproached. Through it all, all we wanted was a clear path that would lead to positive outcome. If it were a card game, every hand i've been dealt has been snatched from me, reshuffled, cards replaced or scattered out of reach midway through. There are so many answers out there for someone looking, but none have been valid or even offered as the best route with any degree of surety. I couldn't help but feel that precious time and resources have been wasted trying to seek an alternative. It has only led us back to conventional methods as my symptoms have worsened. I think my ride for the LiveSTRONG cancer foundation 2 weeks ago was a calm before the storm in the progression of my condition. I felt great the day of the ride, surprisingly so that I felt strong enough to ride hard, like I had a tangible goal I could physically control and work aggressively for when nothing else recently had offered anything close to the sort. I rode hard for the last 5 miles or so, pulled ahead of the rest of our team and focused on the effort, the will to fight hard. I passed the finish line in a blur of concentration and satisfaction of giving it the effort I wish I could distinctly pour into the real cancer fight i'm waging. The effort wasn't without it's consequences as my lungs protested a little afterward, but overall it was a day I felt strong and was proud of. Since then, i've been on a slippery slope of regressing into a state of severe pain that has drained me more than the chemo did. It's focused in the primary tumor which we've discovered has grown enough to now be putting pressure on my sciatic nerve, causing concurrent lower back pain on the left side, tingling and numbness in my feet and the feeling of 'restless leg syndrome'. Pretty much everything; bones, muscles, etc, from my hips to my thighs ache all the time with pretty severe focused pain in the middle. It's led me to need up to 6 Percoset per day just to alleviate the pain and keep me from writhing on the floor. I've now been prescribed a pain management program of low dose morphine to take regularly to fight it. Otherwise, I would be feeling worse than I did after a chemo round. In that much pain, nothing else really matters. I don't want to live like that either.

We also went to see a radiation oncologist to discuss the options and benefits of radiation and will be going for a SIM this coming Thursday and probably starting on several weeks of daily treatments shortly after. This will address the pain as well as attempt to shrink the tumor. It's extremely frustrating however, continually being told that because of the advanced nature of my condition, surgery is pretty much out of the question. Reading about similar cases on my own has only reenforced that statement, though it seems so counter-intuitive to what we're fighting to do that my mind hasn't accepted that as a valid answer. The answers have all resorted to being palliative: treating the symptoms to make my quality of life as comfortable as possible, but saying that there's nothing left to do to really treat it. That's led to some pretty grim thinking that is anywhere but where I want to be focused, but has become almost an inevitability that we've forced ourselves to address and begin planning for. We don't know what else to do...

I'm now in the process of writing a dedication of sorts as something to leave my children should our fears be realized. It breaks my heart at the thought of my children growing up without me. I've turned to finding scripture to include throughout my lessons I wish to leave them, but no matter how strong our faith, not even the promise of everlasting life through Jesus Christ after this mortal one, I can't find comfort in the prospect of my family being left without me. These things hurt my heart and soul more than the physical pain can. This coming week i'm going to be unplugged from the rest of the world and will be at a retreat at the New Clairvaux monastery/abbey in Vina, CA (between Chico and Red Bluff) to grapple with these heavy things weighing on me. This is a chance for me to find the solace, time for reflection, and hopefully rest that I have sought since the beginning of my diagnosis but has eluded me. I hope this time will provide the conversations with God from which I seek to gain guidance, peace, and the ability to truly submit to His will and fully lay my worries at His feet relinquishing the need to control them. I don't know what the cards will hold in the next hand dealt to me, but if I were a gambling man, i'd still have my money on my strength and that of the prayers of hundreds of people behind me giving me the winning hand of a 'full house'.