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.