Thursday, April 18, 2013

Win some, lose some...

           So it appears that I am winning the battle with cancer, but as with all battles, all wars, there have been casualties along the road to victory. First, my job, then a friend or two who for whatever reason couldn't handle ME being sick... (Still trying to figure that one out). Let's not forget the spleen, that mighty and heroic organ that so valiantly took so many of those mutant blood cells with it. I think I'll put in for a posthumous medal for it - it certainly earned one! Then during the next battle, indeed the worst of the fighting, the casualties were astronomical. Legion after legion of hair soldiers were lost, though I was eventually able to bolster the ranks with new recruits, the numbers are a far cry from pre-war levels.

           It was during that battle that I allied myself with an as yet unknown force from the East, and what a mighty force it is!!! With just a small unit (of stem cells) and some amazing new technology, that force enabled me to bolster my ranks from within, in essence recreating a whole new army from those few cells. That, my friends, is not even the most amazing part of the tale... What is truly amazing, some might even say miraculous, is the fact that this alliance came with absolutely no strings attached. No monetary exchange, no promise to lend aid should the tables be turned, no demand or request for anything... Just the chance, from a complete stranger, to start fresh. I can't recall a single moment in my life before or since where such kindness, compassion and generosity have been shown to me...

           Most recently there have been other losses, more hair, muscle strength and flexibility. I had been vigorously engaged in an exercise routine up until the beginning of this year, when I came down with a nasty cold. That was followed by the flu, then another cold, and then cancer brought out its secret weapon... GVHD. This is where the hair was lost, though not from my head. You might not think this a really big deal, but when you have to shower every day and you feel smooth skin where there once was a forest of hair, it acts as a constant reminder of what has been lost. Couple that with sore muscles and tight joints that don't bend as far as they once did, and those seemingly little things begin to pile up. One bee's sting isn't much to most people, but when accompanied by a thousand of his little bee friends, suddenly even the stoutest, strongest warrior can be laid low. These may only be small things to the outside world, but in my head they're a constant reminder that I no longer have that thick head of hair, that I can no longer run for more than a few seconds, that I can't be out in the sun for hours on end, and will never again have tan skin, that I don't have that job I so loved, and that I may never again do that kind of work professionally. It can make one want to give up trying to regain what was lost. And then the gorilla in the corner grunts and sends his minion Guilt over to flank me. Guilt that I'm not working . Guilt that I do not provide for my family, who are MY responsibility. Guilt that if I don't get up and stretch and workout and run, that if I don't fight through the pain, I am somehow not living up to this awesome gift that has been given me. Guilt that somehow my donor would be seriously disappointed that I haven't climbed Everest or run a marathon, that I haven't gone on to accomplish some miraculous thing... And so I sit and contemplate things that I have no business contemplating, lost in thoughts trying to answer questions I cannot answer and never will, for there are no answers, or the questions aren't mine to answer, not my responsibility.

           So if I make some commitment, some promise to do something or go somewhere and I don't finish the task or arrive on time, please have patience and know that on the inside the war still rages, and most days it ain't pretty... Know too that I did my best, because you don't know what it's like on the front lines.

          War is hell!

Thursday, April 11, 2013

So you beat cancer, now what?

      That question has been on my mind an awful lot lately. Not that I think myself so bold as to have beaten it, there's still a ways to go as evidenced by my little visit to the hospital but still, it never hurts to have some sort of plan. That plan seems to be elusive though. Somehow when you are young and just dipping your toe into the waters of life the endless possibilities of what life has to offer seem much less daunting than they do at forty-two... Now that there are kids and a wife in the picture and the stress of daily commutes are a very real factor, the endless possibilities of what one could do to earn a living seem more than a little overwhelming. What DOES one decide? When I pose the question of “What do I do now?” people always tell me what a great opportunity this is, I can do the things I’ve always wanted to... But I WAS doing them. I had a great job working for a great company that rewarded my hard work. I loved what I did but now, post transplant, the doctors frown on me being anywhere near sawdust and that kinda comes with the territory when you're a cabinet/furniture maker. Not to mention that such jobs don't pay nearly as well in California as they do in Michigan. When I think of the skill sets I have, my experiences in the work force, none seem like viable options so I guess I'll have to go back to school to become a ____ And so the question remains and the quest continues...

      I know many of you are wondering about my little vacation to Club Med, or the Palo Alto VA Hospital as it's more commonly known, and thankfully I have some news to tell you. The final diagnosis was in fact GVHD (Graft Vs. Host Disease). This is where the new immune system from the donor attacks me, the host. (How RUDE, right?) We're not really sure HOW it started or why BUT, the doctors all agree that it was a good thing to happen and they had been waiting for it. They also told me that it happened at an opportune time in my recovery post transplant. I am currently weaning off of a round of treatment with Prednisone, that dreaded steroid. I'll also be taking the immune-suppresant that I was on up until last fall for another month or so. All in all it could have been much, much worse. Thankfully I have perhaps THE best caregiver ever known to mankind in Sarah and together we caught it in time and made an appointment to see the doctor.

      Now to tie in to the last post... Depression. Here's something very interesting I learned while I was in the hospital. First, I KNEW I was dealing with depression before I went in. Since the first of the year I have been dealing with colds, the flu and beating myself up trying to decide what I was going to do for a living and my mental/emotional state steadily declined. I sat in my chair and watched TV for hours on end and just felt generally sorry for myself when I felt anything at all. I don't have a lot of friends out here to spend time with and talk to about “stuff”. Just Sarah and the kids day in and day out. Don't think that I don't love them, I most certainly do, but being under the same roof day after day gets old after a while. I needed OUT! Then when I went to the hospital for four days I was exposed to other people and my mood dramatically improved. Just getting out of the house and seeing other people made a world of difference. Sure, everyone will tell you that when you are feeling depressed you should call them and talk to them and believe me that's great and the right thing for them to say BUT, it's not so easily done when you are depressed. See, that's the very nature of the beast when you're dealing with depression. I'm sure there are differences with each individual but by and large when I talk to someone about depression and they open up that is a common factor. It's easy to see things from the outside looking in, but the view from the trenches is much, much different. I have made efforts to talk to people, to socialize with others outside the family and it's paying off but it often takes going through it to see it for what it is.
Just yesterday I came across a link to a great blog post by someone else who deals with depression. 21 tips on keeping your shit together during depression. Here's the link: 21 tips for dealing with depression
Even if you don't suffer from depression it's a great read and I highly recommend you read it. (for those that I email this too I'll copy the text into the email) I also came across a link to some advice for talking to people who are dealing with some serious medical or health issues as well as those who are caregivers or loved ones of said person. It also is a great read and can be found here: What to say and to whom in a medical crisis.
Such great and timely information! I strongly encourage everyone to read these articles, it could change the way you interact with others.

Friday, March 22, 2013

Keep the FAITH!

       So, it's been a while since I posted anything. Please accept my humblest apologies, this has turned into a trying year for me... I started off the New Year with a cold that lasted almost the entire month of January. Then we were whisked away on a Caribbean cruise From Galveston to Roatan, an island off Honduras, then on to Belize City, Belize and finally to Cozumel, Mexico before returning to Galveston. Then February brought me the flu (SO glad I got my FLU shot! Not...) along with some weird skin ailments, sore joints and muscles, fatigue and a few other “concerns”. Now I have found another cold... YIPEE!!! Don't you all fret none, I'm off in just a few hours to see the Dr. and see what can be done to bring all this fun into check before 2013 runs completely off the rails. I'll keep you posted.

        In keeping with tradition here on the blog I have to be completely honest and open. As some of you might imagine dealing with all this sickness, one after another, and the added stress of not knowing what some of the other maladies were caused by has led me to fall into a rather depressed state again. Throw into the mix the fact that I feel and want desperately to get back to work but have no idea where to even begin and things have gotten ugly. Really ugly... There was a brief moment, after tossing and turning for hours one night trying desperately to return to sleep that I thought it might have been easier/better had I not survived the transplant. That thought alone scared me to the very core... I have NEVER felt like that and I have NO IDEA where such a thought even CAME FROM! Now having said that please, PLEASE do NOT start to worry, I am taking action and have contacted the right people to get the help I need. Again, I'm just keeping it real. This is the Dark Side at it's darkest and the facts of life are “you take the good, you take the bad. You take the rest and there you have... the facts of life.” I have not held anything back in writing this blog and I'm not about to start now. I want you all to know the whole story as it plays out. I feel I owe you all that much at least... As before, I'll keep you posted.

      You know it's a funny thing, dealing with cancer. There are so many experts who can guide you through the treatment process from doctors to nurses, support staff and even counselors who are ready and willing to see you through the battle but once it's over there simply are no rules, no guide books on how things will go. I know of patients with cancers similar to, if not the same as, what I had. (Those of you who are paying attention will have noted that spark of positivity - “had”) One has gone back to work at the job he held before. Some are still recovering, some didn't make it and last I knew there was still one who, over a year after treatment was STILL at the BMTU because his numbers hadn't returned to safe enough levels for them to feel comfortable letting him go home. Then there's me... For the most part things have gone very, very well and yet I still feel lost. I heard a song the other day wherein the lyrics went something like “you can't be lost if you don't have a destination...” So I guess since I don't know where I'm headed I technically can't be “lost”, but that's the best way to describe how it feels. I try not to be too hard on myself but at the same time I think that if I'm not going to make SOMETHING happen who will? I mean I have to take some responsibility here, right? This is my life and no one can live it but me. Here's the catch... People always tell me this is such an amazing opportunity to do the things I've always wanted to do. I can BE anything with regards to work, the slate is wiped clean... But I was DOING what I loved, chasing my dream and now my strength has gone and the doctors have advised not being around sawdust, nor can I be in the sun for long periods with out taking extreme care not to leave any skin exposed as even the slightest sunburn can be fatal.
       So where does one go, which direction do I take when the things I loved doing are no longer an option? How do you find a new passion, a new direction for your life? How does one start fresh at nearly 42...? I try to have faith that He has a plan, I just wish He'd give me a bit of a teaser cause this flying blind is getting old and I begin to wonder is my faith strong enough to see me through this. I suppose that's something I have to figure out on my own, like so many other things. God help me, I'm trying...

Friday, January 25, 2013

What makes a hero?

I remember growing up who my heroes were, men like Neil Armstrong and Buzz Aldrin. Perhaps a fictional character like Spiderman or Batman and for sure my dad, a smattering of uncles and most definitely my grandfather. Now THERE was a bonafide hero! A man who, even when I caught up to his towering height and surpassed him, loomed larger than life, at least in my eyes. He never swore in front of me, or other kids, until I suppose he felt like I was old enough to swear myself. He served during WWII but never asked for any recognition of his service. In fact he rarely even talked about the War. He was a man who knew how to relax and taught me how to garden and fish and took me when the opportunity presented itself. He inspired me to work on my own vehicles and be as self sufficient as possible. He taught me how to go on a bike ride, not to ride a bike, but how to enjoy the ride. He never got rich monetarily despite his efforts to scratch off every instant lottery ticket he could get his hands on, but he lived a life rich in love and those whom loved him. He stayed married and faithful to my grandmother for a very long time and never said an unkind word to her, or about her. If ever there was one person who taught me how to be a man and how to love, I can't think of a better example...

As I grew older I never really got into sports but I did watch basketball and even played a little in school. I remember players like “Magic” Johnson, Isaiah Thomas, Kareem Abdul Jabar and Michael Jordan. Those were some GREAT players! I can't say that I ever looked on them as heroes though, just great ball players. As I got older these players retired and new ones took their places, players who made more money and got more endorsements deals and quite frankly could never achieve the level of mastery of the game as those before them. And when did Pro basketball players become such good actors falling all over the floor in dramatic fashion trying to “draw the foul”? No, these are not heroes, at least not when they are playing the game. I know that a lot of professional athletes do a lot of great work outside their profession but the mere fact that they are athletes does not, in my mind, make them heroes.

Now we have entered the era where “performance enhancing drugs (steroids)” seem to have become the norm, or at LEAST far too commonplace. Barry Bonds, Mark McGwire, Lance Armstrong... WHAT?!? Lance ARMSTRONG??? no... Not seven time Tour de France champion and cancer survivor Lance Armstrong. Not the man who I admired for not only beating cancer but going on to win races afterward. Not the guy I looked up to because he showed me what could be accomplished after fighting cancer. Damn you Lance! That HURT! I know that the bible teaches forgiveness and that we are forgiven, but dude... I'm not sure I can forgive you. I have struggled since my transplant to put my life back together, to find some sense of purpose, to retain those dreams I had before - and in you I saw someone who wouldn't let cancer get in the way of their dreams. And you denied the allegations, vehemently and repeatedly. Only it was a lie... Now I find myself rethinking everything about where I'm going cause ya see, I don't DO drugs. I didn't even want to take the medications the doctors ordered me to take. After my splenectomy I stopped taking the pain pills early because I didn't want to become addicted. At every turn I ask the doctors when I can start weaning off the meds I'm on (I'm down to ONE!). The fact that you would do such a thing is unconscionable, unfathomable to me. How COULD YOU?!? Forget the cycling fans, how could you put up such a front as a cancer warrior and then show the world that it was all built on a foundation of cards? I don't even know how to separate the cancer warrior Lance from the doping Lance...  Was any of it real?

I guess it's time to take a step back and really look at who we look up to and why, and perhaps look at who our kids look up to and why. As a cancer survivor I'll look to those who faced the unknown with bravery, courage and an eye toward the future. As a man I'll look to those who helped mold me into the man I have become like my grandfather, my father and my uncles. As a father I'll start taking a hard look at who my sons and daughter look up to and make sure they are not only worth looking up to but that my children know how to really pick a hero. As a Christian I'll try, Lance, to find forgiveness in my heart but I don't think that cycling should let you back in. I think Lance needs to take a good hard look at who he is, and who he wants to be. He's got a long hard road ahead and by finally fessing up to the doping he has pedaled the first stage but there will surely be many more and the terrain will be challenging.  I wish him the best of luck and I hope he has found his courage and a more than a little humility, he's going to need it...

As for myself piecing my life back together post-transplant, it is proving difficult, heroes or no heroes. Ultimately, I think we have to look inside for our heroes. I never asked to be a hero to anyone, but then again I guess the best heroes never really did either. What do you think makes a great hero?

Wednesday, January 16, 2013

Have a slice of humble pie...

The other day, after a long day of running errands, the boys and I stopped at our favorite burger joint for some dinner before we headed for home. We were hungry and although it wasn't really “dinner time” yet, we had skipped lunch. We pulled into Sonic and placed our order and it took a really long time for it to come out and when it did it was wrong. I knew it was wrong because he tried to hand me a drink and we hadn't ordered any drinks. I sent him away with it never having looked in the bags at the food, which as it turns out was right and they had just placed another order's drink with our food. Long story short in the correcting of the orders, ours and another car's, a manager brought out a duplicate order and thrust it in my face with an exhausted forced smile, apparently her way of making things right with me... So now the three of us had four very large burgers, four breakfast burritos and several extra orders of fries and tater tots. In an effort to get on with our meal and sensing that she wasn't about to take the food back (clearly what to do with all this food was now MY problem) I grabbed all four bags and got back into the truck. I doled out what each of my sons had ordered as well as mine and we began to eat, FINALLY!

As we sat there listening to the radio I mulled over what I was going to do with the extra food, I'm NOT one to throw away food, especially GOOD food! But we (Sarah and I) have been trying to eat smarter and healthier so I was already going against my better judgment by eating fast food and I certainly wasn't about to have the three of us eating more than twice the food we really NEEDED. So, what to do... At this time I started thinking of who could really use the food and I remembered that we were in Modesto and there is a rather significant homeless population there. A light bulb turned on over my head - I was going to drive around and give this food to someone who REALLY needed it! I shared my plan with the boys and they agreed it was a Grand Plan™ so we ate our food and I got on my fancy “smart phone” and posted to FaceBook a brief synopsis of what had occurred and said we were on a “Mission from God,” like the Blues Brothers of old. Then, our meal finished we were excitedly off on our quest...

We drove through the busy downtown streets of Modesto, where I had typically seen the homeless, and as it grew dark I was finding it difficult to find someone to give our bounty to. Finally I spotted someone and made the initial turn to make our delivery. Turns out that with sufficient traffic and copious one way streets and stop lights it can be rather difficult to catch up to homeless people even ones pushing a loaded shopping cart! After what seemed like an eternity and several round-about turns later I was able to find a place to stop just half a block past them as they emerged from a back alley. I jumped out of the truck, paper bags of life sustaining sustenance in hand and saw they were about to cross the road... I thought “*&#$! They're getting away!” Ok, maybe I've seen a few too many police shows and spy movies... It was dark and here I found myself trying not to scare a couple of homeless people but not wanting to miss the opportunity to help them so I held the food out to the side at arms length and (trying not to sound threatening) yelled “ARE YOU HUNGRY?!?” The woman not pushing the cart yelled back “YES!!!” and started toward me nearly half a block away. “GREAT!” I thought, “Mission accomplished!” I quickly walked toward her, arm outstretched and food in hand and as I approached I could see in the glow of a street light that she was maybe my age(-ish) and the person pushing the cart was, what appeared to be, a young man about the age of one of my sons. Their shopping cart was filled to over flowing with garbage bags filed with who knows what and there were a couple hanging off the sides of the cart. The young man had a guitar slung across his back and he stood there waiting for her to get the food from me. We met and I gave her the food and she thanked me profusely and very politely.
I turned and went back to the truck and as I looked back from about half a block away they were crossing the street and she looked at me and yelled thank you again. I can clearly remember thinking how great it felt to have helped someone truly in need. I felt good about myself and like I had perhaps taught my sons a great life lesson about taking care of those in need even if you don't know them. So then, WHY did I get in the truck and break down in tears?!? I sat there sobbing and confused as wave after wave of emotion crashed over me. My sons, God bless them, laid their hands on my shoulder to comfort me and as I regained my composure realization set in and as they asked if I was ok and what was wrong I told them it looked like a mother and her son, not much different than their mom and one of them and I felt really bad for them. I immediately started to think of what more I could do... Like I desperately needed to save these two and help them get back on their feet. My “mission” was far from over... I looked back and they were gone, vanished into the dark alley and not even a quick circling of the block would reveal their whereabouts.

The thought then crossed my mind that those two people that I had given food to could very well have been any of a number of people I know who have fallen on hard times. I thought of how close I have come in my life to being homeless and wandering the streets if it were not for the kindness of family of friends... How could this woman NOT have family or friends willing to take care of them? Willing to help them out, lend a hand...? I guess it happens, somehow, sadly, that people for whatever reason fall on hard times and perhaps they don't have anyone to turn to, or they feel embarrassed to ask. Maybe there is some mental illness that plagues her, who knows. All I know is that my “Mission from God” had turned into a slice of humble pie. Since that night I can't seem to shake the memory of what I saw. Sure, maybe my initial impressions were far from accurate. Maybe it wasn't a mother and her son but a haggard looking young couple who had each on their own left some horrible home life and found each other. Whatever their story, whatever the truth, I know that I am now thinking of ways I can help those who are really in need.

Maybe God had a mission for me and Fast Food Delivery was only the start. Who knows... So I've been thinking of ways I can help without just doling out what little money I have. I have always hated giving homeless people money, always thinking in the back of my mind that they're just going to buy booze or drugs and that certainly doesn't help. Sarah and I have had people “beg” for money before and offered them food that we had and had our offer refused. One guy even told her after he was offered a PB&J that what he really wanted was a Jumbo Jack from Jack In The Box. Good luck with that buddy... But I have been thinking of what I can do that will really help. What do they need? It's been cold here lately, like really cold not “California Cold”. Temps have dipped down into the twenties and there has been frost. These people have no home, no forced air heating system, no warm bed to sleep in... I can't even imagine what sleeping out in the cold must be like. No hot coffee in the morning, no hot shower, many don't even have anyone to snuggle with for warmth. So what can I do? I'm still mulling that one over and if anyone has any suggestions I'd LOVE to hear them. Please share them in the comments below.

Until next time I hope that you all see those who live on the fringes of our society, out in the cold of winter, in a little different light. I pray that, perhaps, you are led to do God's Work© and that you have a chance to be more like Christ. That you have the opportunity to love someone who desperately needs just that, a little love... Sure, maybe you can't turn a a few loaves and some small fish into a feast that will feed thousands, but you can make a difference with the smallest of gestures. I have seen a quote numerous times, attributed to Gandhi, and it goes like this: “Be the change you wish to see in the world.” There is some conjecture as to whether or not he really said it and even some that have tried to correlate it to a longer quote. Whomever DID say it, I think there is truth in it and it's simplicity.

Be the change you want to see in the world. You may not change the world but you may just end up being the spark that ignites the inner fire of change in others. It worked for Gandhi, Mother Teresa, Martin Luther King Jr. and a few brave men a couple of hundred years ago that set out to address some wrongs they perceived. They sparked a revolution that led to the birth of a great and mighty nation the like of which the world has never known.