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.

Tuesday, November 27, 2012


Many of you are aware of the recent developments in our journey with cancer. But, just in case you aren't, here's the story:

       Pete started on hospice about a week ago after we decided we needed to streamline his care. We were tired of having to complete nothing short of a circus act every time he needed a prescription refilled or a test ordered. So, we decided to initiate hospice so that we could have one point of contact and in hopes that we might be able to find someone with a better plan for managing his pain than all the other doctors had in the past. So, here we are, sorta at the end of the rope, so-to-speak. Although it's difficult to digest, it's also a little freeing and I think Pete would agree. I finally feel like we can really start living, although it may be near the end, instead of constantly striving to find a cure, that likely isn't going to be found. We were both tired of hitting brick walls, of being told "no, we can't", and of being given false hope. If you've ever experienced anything remotely close to our situation, you know it is ALL consuming; emotionally, mentally, and physically draining. You constantly feel as though you have to be one step ahead, in order to control the circumstances. However, no one really ever tells you straight out that you're not in control. They just allow you to keep pushing and pretend like it's all going to be okay. At least, this is what we experienced within the medical community. Now, finally on hospice, we can breath. We can look forward to our remaining days together and doing our best to fill those days with love, lasting memories, and laughter.
      As I said before, this journey has been all consuming and that's not to say, with the start of hospice care, it still isn't. It just is in it's own way. There have been many times that I have pretended to be okay, but really I'm just masking my emotions. There are times, even still, when it all seems like a dream and then I snap back to reality. I remember that I have to wake up to a hospital bed which takes up the majority of the living space to the right of what was once OUR bed. And I take one look at my husband's emaciated body and realize he's not the man I married in his entirety; the disease has overtaken the man he once was. And then my thoughts come back to my children. I remember that there will be a day when their father's voice will no longer resonate among the walls of this house. And, again, I realize this is our reality.
       Last Sunday at church my emotions took over. We were told to take some time in prayer to come before God. All I could think of was that I hoped I would be able to fully honor Pete's legacy in the years to come, long after he's gone. I thought back to our "Family Mission Statement" that Pete painstakingly wrote for our family while Izzy was still in the womb. He made it a point to explain that we would always show the love of the Lord to everyone, wheresoever we shall dwell. I wondered if I would be able to do that. Would I be able to teach my kids how to love everyone like their daddy has? Would I be able to break away from the mainstream culture to allow my kids to experience the life Pete and I had imagined for them? Or would I allow them to lose themselves in a constant stream of movies, video games, and pointless activities in order to cope with our loss? These were all questions that I agonized over while I sat there, with tears streaming down, head bowed before the Lord.
       And unlike cancer, these are all things I have control over. The way our children spend their time. Who they interact with. Whether or not I model God's love for others for them.
       I've lived long enough to know that we're all human, and I'll likely make mistakes in the years to come, however, I'm very grateful for the legacy my husband, their daddy, will leave. I am also honored (and a little scared) to have the opportunity to carry it on.
       While putting Izzy to bed tonight, I succumbed to her story request. I came up with a little story about magic baking elves who surprised a very poor family with yummy treats during the holiday season, when otherwise they would have had nothing. In the end, the family divvied up their yummy treats and shared them with their neighbors. Then the following bible verse came to mind (Thanks Mom!): "When someone has been given much, much will be required in return; and when someone has been entrusted with much, even more will be required." Luke 12:48.

And then I realized, the story and the verse were as much meant for me as they were for her. 

Saturday, November 17, 2012

A Daddy's Love

As I was cleaning the house in preparation for Pete's homecoming from his Dad's this afternoon, I sat down for a minute while the floors dried (ok, I know I'm a little obsessive about the house being perfectly clean!), and my eyes fell upon our Shutterfly memory books I have compiled of our adventures over the past couple of years. As I went through them one by one, I was amazed by how much times have changed. I was also reminded of the wonderful adventures we've experienced as a family. There are times when it all seems like a dream but then I look at those special photos and my memories are overflowing once again. I am filled with awe and amazement as well as a bit of envy for those times that have passed. Then I wonder why things aren't as simple as they once were.

What I see the most are the memories Izzy has shared with her daddy and I am thankful that those have been captured through photos. I see her actions in each and every one of those photos that mirror her daddy's spirit; a spirit of adventure she will carry on with her through the rest of her life. I also see the fullness of love that her daddy has for her. I witness it in all the photos in which he is with her and I hope and pray that she remembers the special connection they share. 

This all makes me ever so grateful for what her daddy is to her. He fills a role that I wonder if I will be able to fill. He is the ultimate storyteller, the most genuine friend, and the undivided attention giver. The truth is that there may come a day when she may not remember the specifics of her and her daddy's interactions but it is my hope that I will be able to make those memories live on for her. As a mommy, it is always our most innate desire to protect our children from hurt and pain, however in this instance, I have no control over that. I can only hope to ensure that our little Izzy understands the ultimate love her daddy has for her and will always have for her. 

There are so many unknowns in this life and there will always be so many unanswered questions during our time on this earth, however our God is bigger and his love for us is bigger than anything we will ever know. I am so thankful that our precious Izzy has her earthly daddy's love for her as a mirror for what her heavenly Father's love is like. And in the end, I think that is the only thing that matters because there is nothing I can do to change any of this story, it just is as it is. But I am so eternally grateful for Izzy's daddy and who he is to her and although this story may not turn out as we planned, I know she will always be as well. 

Tuesday, October 16, 2012

Hey Mr. Tambourine Man

I am, as Bob Dylan suggests, much akin to an exhausted narrator of a dreamy tale to which I seek an answer of how to escape, unable to sleep yet wandering sleepily as if in a dream after someone playing a tune like the pied-piper who I somehow know in my heart-of-hearts has the answer I seek entwined in his song but my weariness is so profound that try as I might, I cannot catch up to him to be freed through knowing it's words. My days are more nightmarish than many of my nights which at least bring some hours of deep, dreamless and yet unrestful sleep provided by any one of many versions of benzodiazepines. As of late, when my days aren't filled with experiences of learning how to reteach a lung how to perform oxygen exchange again after being half choked with foreign fluid and the searing pain of trying to re-inflate it, I can still try to enjoy a semi-joy filled life with my family. It's true the latest episode of "draining" the fluid from between the pleural spaces (the liquid isn't actually in the lung itself, it's between the two pleura; the parietal and visceral), which prevents the lung from fully expanding, this last time being 50% full, was much more traumatic than the last. Neither was anywhere near pleasant since I had a bad reaction before the actual procedure began last time too. This gave me the opportunity to know what a collapsed lung feels like when they were almost finished draining the 3 liters I had sloshing around in there, I began coughing uncontrollably and painfully as I hyperventilated at the same time but was gasping for air I couldn't get because the lung was completely collapsed and took almost 2 hours of coughing and gasping for it to get it mostly inflated yet still some fluid did develop in my lung and I continued to cough painfully and gasp my way through the rest of the night coughing up the left over fluid. I can only just now breathe fully but with pain still stabbing in my side and tightening worse if I bend over or need to cough. I just hope this too fades and doesn't become the norm. All they can do is perform either a thoracoscopy with talc pleurodesis (which "blows" talcum powder between the pleural layers to cause scarring, thus binding the two layers together to prevent fluid from building), or inserting a permanent 'drain' to thus empty the fluid as needed wherever I am. Hmm, decisions decisions... We speak with an interventional radiologist tomorrow to discuss options. A normal day in the life: what kind of tube should I stick in my chest?!

Alysha did a good job of filling in what's transpired in the last few weeks as i've been a sociophobe and have avoided writing to anyone. To that I apologize for. I've preferred the altered reality of fiction novels to set my mind into another time and place so I don't have to confront my own present reality. It's easy to describe the few days that have been truly horrible and make it sound like a daily occurrence, which it isn't, yet as Alysha mentioned, most days are still filled with almost unbearable pain which I attempt to just muscle through so my kids can enjoy their life even though mine is hard to to picture as enjoyable if I can't focus past the pain and discomfort that adhere to me and invade my mind, body and soul. Still, most people can't believe how well I look when they see me. I am glad I can still be perceived to look healthy and vivrant, though mostly am biting back twinges of pain at every move and masking the odd sensations I can only begin to describe of being freezing yet overheated and sweating at the same time. Aside from the aches and pains, again, Bob Dylan nails it with the line of how: "my weariness amazes me," embodying the acute speed in which I now live due to mental and physical fatigue. From that same lyric string, the answers i've sought to find a direction in which I can follow to get me through this bloody confusing mess of a disease and the treatment we've followed and continue to seek answers from but get only riddles and attempts of cajoling contentment without anyone stating outright that they're treating me as a terminal case, which they do, echo what Dylan jangled on about how the answers to my conundrum of a life 'vanish from my hand', leaving me standing there blindly "but still not sleeping."

Being "branded on my feet," as Dylan sings on, is exactly how I feel when I want to run out to fight it bluntly but am left swinging wildly at nothing but my own infinite anger. My feet don't move and every ounce of energy drains from my body just from the thought and initial impulse to move. All my joints ache, my breathing is labored and with every breath, pain shoots from under my left armpit through my ribs and into a sharp jab in my side and strangely right behind my heart as if the cancer is trying to strangle that as well. I'm defeated before I take my first step. I feel like collapsing into the miserable sorry heap that I feel like and crawling away somewhere dark to curl up and hide from the world so I don't owe anything else to it so I can just evaporate from existence. Then my kids run in laughing yelling "daddy daddy", thus giving me the strength to face the day. My wife finding every opportunity to provide positive outlets for me, and hearing and reading all the outpouring of support, prayers and love also give me the drive to push past the first overwhelming crush of each day, but each day goes on, good or bad and gives me the opportunity to make the most out of it if i'm not just totally floored by it all that day or I can live it and get the things done I want to in order to feel... 'ready'. I know God wants us to submit our cares and worries to Him as he will take care of them all and deliver us in His own way. With my knowing where i'm going but just not quite when yet, I just want to enjoy the most out of everyday without worrying too much about doing everything perfect, just getting by to the best of my ability and eating good, not necessarily the best I could possibly be eating, but doing what I like and what's fun. I try to deal with alot less BS when I possibly can; I cut people off when they're just wasting my time or beating around the bush, I just don't have time for it. Priorities are different now too; some things just don't really matter as much anymore so I don't bother myself with them.

So "let me forget about today, until tomorrow," and I will write you another tune. Until then, i'll just keep on keeping on as best I can and I wish the days that are brought to you all bring you to where you need to go and fill you with what you need. We will most often find what we seek if we just allow ourselves to open our eyes to what's right in from of us. I seek a cure for something incurable in a case that's unsolvable and for surgeries that are inoperable. My solution is right in front of me: peace. I just have to wrap my head around exactly what that means for me right here, right now. It's mine for the taking. I just have to stop being angry at having to settle for that and not a return to the life I had before and accept that what I have is what i've got. It may not be what I want, but it's surely enough to grant me happiness and peace within if I can figure out how to hold it.


Monday, October 15, 2012

ER, Surgeons, & ER again

A lot has happened over the past month. I know a lot of you follow the blog and appreciate staying up to date so I am going to update you with as much information as possible while still keeping it succinct and to-the-point. So here it goes....

In the CANCER world there are really no easy days, just days that are easier than others. Throughout this journey we have had our share of tough days but I would go so far as to say that this past month has been one of the hardest we've experienced yet.

It all started with Pete's lungs needing to be drained in Portland while were passing through on our little mini RV trip. That was a shocker but we didn't realize how quickly that incident would lead to a progression in his condition. At that point the ER doctor informed us that he may need to have it drained again sometime soon but that he couldn't be sure how quickly it would fill up.

About a week later we went back to the ER, this time in Red Bluff. At that point they didn't think there was enough fluid to drain it and that we should come back again in about a week or when we thought it might be half-full. Over the course of the next couple weeks Pete would constantly say, "If it hurts this bad now, I have no idea how it's supposed to feel when it's half-full." He was just in constant pain all the time. His pain meds were increased and he began attempting to sleep propped up by pillows, sometimes rotating between the bed, couch, and lay-z-boy. It was then that he decided to ask his oncologist to write him a prescription for a hospital bed because he needed a better way to attempt to get some comfortable sleep.

Shortly after that, my FIL came up to attend a few of Pete's most important doctor's appointments to date; the appointments with the surgeons. It seemed that all our decisions had been hinging on these consultations. However, we mostly knew what the result would be but still tried to feign positivity. Pete's step-mom, who is a nurse, had informed us that the lung situation would most likely mean the surgeons wouldn't feel comfortable operating on him. There are a host of things that could go wrong including collapsed lungs, not being able to remove the breathing tube, or his body being immuno-compromised and not being able to recover. It turns out she was right and as much as we didn't want to hear it, her honesty was really what we needed to prepare ourselves for those two appointments.

One of the surgeons that we have been meeting with regularly over the course of the past 10 months is Dr. Matthews. He's a young guy with lots of energy and compassion. Throughout the past 10 months he has been there to answer the hard questions and has showed so much desire to help Pete. However, when we left that consultation, it was difficult not to be angry with the final result of our meetings; surgery just wasn't an option. It made me wonder, "What would it have been like if he had just done the surgery when Pete was first diagnosed?" But in the midst of our silence, after leaving the Dr's office, I had to remind myself of the positive. I told Pete, "Dr. Matthews really cares about you and if he could just snap his fingers and make it all better he would, but he can't so he is willing to do anything he can to make this better for you." While in the consult he talked with us about chemo vs. "quality of life", hospice care, counseling, and our new treatment options. He committed to taking the next steps to get Pete connected with someone he can talk to and an interventional radiologist to help with the lung problems. These are both things we needed and are very thankful that he offered to spearhead those endeavors.

After that appointment we headed down to UCSF in San Francisco. The result was the same. The Dr. explained a little more about why she didn't think surgery was the right option. She then suggested we meet with a genetic counselor to discuss the history of cancer in Pete's family. It's a good thing Charlie was there because we were totally clueless about ages of family members at diagnosis, etc..

The next morning Charlie urged Pete to be seen at the ER. It's a good thing he did because Pete's lung was half-full of fluid and his lung was on the verge of collapsing. It was hard to believe that it had filled up nearly 3 liters of fluid in less than 3 weeks! I was calling the ER to check on Pete periodically while I waited at home while Lucas napped. Charlie had told me how difficult the fluid removal was for him but said he was doing better now and that he would have another chest x-ray and be cleared to go home. Just a few minutes later he called and said, "Pete's having trouble breathing and he'd like you to come down. Just leave the kids in the car and I'll take them home. They don't need to see this." That was the quickest I have ever gotten out of the house with 2 kids. Amidst tears I pulled up to the ER and saw Charlie waiting outside. He apologized for scaring me and said Pete was just in a lot of pain but would be alright.

The minute I walked in the ER and laid eyes on Pete I knew he was in severe pain. He was coughing uncontrollably, tears were streaming down his face, and he was struggling to keep his temperature under control despite being wrapped up in 3 hospital blankets. I was enraged and immediately ran over to the nurses station to figure out what was going on. Within 5 minutes they gave him a shot of pain meds and the respiratory therapist was able to get him to take a few deep breaths to help him expand his lung. That was a scary couple of minutes, but I was so glad to see that he was okay although I hate to see him in such intense pain like that.

The doctor explained that it was such a traumatic experience because of the amount of fluid that was drained from the lung at one time. That's why our next course of action will be to meet with an interventional radiologist who will help us decide on a procedure which will help him remove or relieve the pressure of the fluid on his own.

So, it wasn't so short, but there's an explanation of the recent chain of events.