The perspective that time gives.....

  I'm a little late on my latest entry, I had a goal to do at least one a month over the summer, but as you can see, I didn't make it. I did have some time to reflect though.  I asked myself a question. I asked myself if I could see a difference over the last five years in my life. What was expected? What was unexpected? Have the last five years had any influence to shape me into the person I am now? Five years may seem like a short window, and in a lot of ways, it is. We tend to get comfortable in our routines. So much so, that we get a little upset if we get interrupted sometimes, don't we?  I think it's understandable, after all, we are creatures of habit.

  But I think that five years is a long enough period of time to look back, and get a perspective of what direction you've been headed, and where you are going. You can observe yourself from just about any criteria you may want to examine yourself from. That's the variable. The time period is variable too. It doesn't matter if it's five years, ten, it can be anything you need it to be. The constant here is your direction. And it requires honesty with yourself. That can be a tough one, not a lot of wiggle room. There is a popular idea making the rounds in some circles these days, that perception is reality. In other words, if a person sees something, witnesses an event, then that eyewitness account is equal to reality. In some cases that might be true, but not in every case. Sometimes reality is reality. We have to be smart enough to use insight and judgment, objectivity and distance from emotion, to just look at the facts, and see where they lead us. The reality of a situation might be 180 out from our perception of it, we have to be willing to let the truth say what it has to say.

  Five years ago, I was in a totally different place in my battle with cancer than I am today. My home situation was different. I still had a son at home, (miss those kids), I was still working full time, now I'm retired, and I was fighting cancer by trying to manage it's growth with pills. Now I'm on chemotherapy. I've been battling this disease for ten years, actually almost twelve. I was diagnosed in 04. I've jumped through a lot of hoops, my wife with me. Not a lot of women would have stuck this thing out the way she has. Chemo is a lot different than pill therapy. It messes with your mind and your body, in terms of side effects. I got started on it because I was on a strong pill regimen called xtandi. My body couldn't tolerate it. They tried cutting the dose down, but I just couldn't take it. It made me so sick, I thought I was going to die. So they told me my only other choice was to go on chemo, which is my last resort as far as treatments go. That's a pretty scary proposition when you hear that. And I have to be on it for the rest of my life, unless something else comes along.

  Let me see if I can come up with an analogy that might work to describe this to you, I don't know, I'll try. You know the old saw about the t.v. commercial showing a frying pan with eggs in it, and the voice-over says this is your brain , then they scramble them and say this is your brain on drugs?It's kind of like that. A better one might be to compare it to algebra. You know the basic idea behind algebra isn't math. It's to teach you to think in a logical, systematic order, to think in a reasoned way using an order of operations that make sense. Let's call this normal brain function.Some people are able to think on a higher level, let's compare that to Pythagorean theorem. If I can just put this in a nutshell, it's using algebra to solve trigonometry problems. You have a formula for solving for sine. cosine and tangent. Some people are that smart. I've seen them. They're very smug, haha. I said that to say that on chemo, your brain goes down from that, to trying to make change for a dollar. That's probably the hardest thing I've had to adapt to in the last five years.

  But before I could even start on that, I got admitted to the hospital with pneumonia. Turns out it was COPD, which is now a huge problem for me too. I got admitted three times for that, and the doctor told me she was surprised I came out alive, but I did, and I had to build my strength back up before I could begin the chemo. I also found out I had congestive heart failure. So over the last five years, there have been some major changes in my body, and my lifestyle. It's fair to say that my life is completely different now than it was five years ago. As I've gone along, I've adapted, or tried to anyway, to changing needs and new challenges. One biggie is finding a way to exercise my brain. I've learned that you can't just sit around and do nothing. That's just waiting to die, and I'm not doing that. So one of the biggest passions in my life has always been music. Ever since I was a young kid, I've needed it in my life like I need air to breathe. I listen to everything, whether I like it or not, sometimes just to identify what's going on, structurally in the song, just to stay sharp (no pun). But I play mainly guitar, acoustic and bass. I may put up a video sometime, I don't know. But playing every day I can really helps my hand/eye coordination, as well as working my mind and trying to keep that strong. I'ts also fun, and that's important too. I'm trying to be happy, even though I'm sick. Being happy releases good chemicals in your system, which works to help healing in your body. It's good for you. So there's always a silver lining somewhere. And this is just some of the perspective that time gives. :D

Unsung heroes

Hey all, I have been thinking about this subject for several weeks now, how I want to word my ideas, getting all my thoughts expressed, etc. This is an area that I don't see a lot of discussion on, but it is a very important one, because, if, as a cancer patient, you have a caregiver, you are a very blessed person.

My heart goes out to those who have no one to help them fight this battle with them. I can't imagine having to deal with all the problems, side effects, tests, appointments, emotional ups and downs, and all the other hurdles that present themselves during treatment, and having to do it alone.

I've seen those people. They struggle to get into the infusion center on time, then they have to get themselves back home after the therapy session. That isn't the time someone wants to be alone, especially if the medicine has been building up in your system, it's more difficult, because the symptoms show up sooner, and intensify sometimes, as you go along.

I should mention that I am off treatment now. I have been for about a month. I'm starting to feel really good again, getting some strength, we are hoping to have a good, long stretch of time before I have to go back on treatment again. But as I reflect over the last year, and really, over the last decade +, I don't know how I could have gone through it without my partner and best friend, my wife. Now I'm sort of taking my life in my hands here, because she is the type who doesn't want any recognition. :) But this blog has always been about trying to inform and discuss subject matter that you don't hear much about as you fight this disease. So it isn't about her alone, it is meant to cover caregivers as a whole.

You know, it's not a crime for a caregiver to need some care themselves. Sometimes we conjure up an image of a Florence Nightengale type of person, who never needs, or asks, for anything for themselves. And even though they may project this kind of image, we need to remember that everybody is just human. It isn't wrong, it's not weakness or a character flaw for you to need something for yourself as a caregiver. You need to give yourself permission to pamper yourself a little bit, at least once in awhile. It will be better for your situation as a whole. In our case, the facility we went to had a sort of day spa, and my wife and daughter-in-law enjoyed a pedicure while I was getting my testing done. The point is, find a stress reliever, because you will need it. Not to mention you deserve it. Go see a movie. Have a little bit of alone time if that's what you want. Maybe your circumstances won't let you leave your patient alone, or you just don't want to do that. Maybe you could find something to do together. Right now, my wife and I watch tv together. It doesn't sound like much, but she works all day too. I have been feeling better, so I have been finding ways to help her around the house, cleaning up the kitchen, fixing dinner, and more as I get more strength.

If you are a cancer patient, and you have a caregiver, you need to thank the powers that be. If possible, take them out for a nice meal, or create a moment at home for them. Don't take them for granted, imagine your life without them. What would you do? This person is a gift, I believe we should show some appreciation. And by the way, I wrote this as much for myself as I did anyone else. Ok, till next time then, get better!

Update...I'm still here.

Hello to you, Dear Reader! It has been almost two years exactly since my last post. Not that very many folks were reading, but many of you understandably may have assumed the worst by my long absence.

I'm here to say that thankfully, this wasn't the case! It has given me a chance to reflect on some things though, I mean my time away. I began this blog as a means to chronicle what happens to a person in my shoes, so that they could be forwarned a little bit, and know what to expect. Our medical system has made many wonderful advances, but there are some areas where they are still lacking, and it seems like explaining to a patient what to expect in a certain timeframe is one of them. They tell you some things, but the don't or can't, tell you everything. So you have to learn to ask questions. Sometimes tough questions, that you may not even be sure you want to know the answers to. And, not to slight the doctors, but, they don't always have an answer. They'll tell you that themselves.

So when I left off, I was telling how I had had surgery, which failed, and radiation, which also failed. Have you ever felt "up against it"? I did. I mean, here I had had seed implants, pills, (Which are only designed to manage the growth and spreading of the disease, not cure it), radiation, surgery, more pills, injections, etc, and nothing was working. Add to that, people all around me were getting cured of the same cancer I had. Yes, I looked skyward and asked "Whazzup"??These treatments also wear you out. I mean you become very tired,and can't think straight. Then there's recovery time, which gets worse as time marches on.

I'm very thankful that cancer is getting a better success rate these days. I'm very happy for those whose stories have happier endings than mine, and other folks that I know. I'm serious about that. But there are those like me, whose stories don't appear on the surface to be as happy as others. Let me tell you that isn't necessarily the case. I'll come back to this later, because I have some other things I want to tell you.

I was in a place that was very dark. I was running out of energy and hope. I was deciding which direction I would go next, with the help of my wife, when a friend suggested we try Cancer treatment Centers. You've seen the commercials. So, we made an appointment. I have to tell you, even if I had never had any more relief from the cancer, I still would have gone there. These folks were wonderful to us. It was the shot in the arm that I needed, at just the time I needed it. I think it really helped Lisa, my wife, too. It was at this point in my treatment that I was kind of forced to resign myself to the fact that I was not going to see a cure. However, it was also here that I was taught how to really improve my quality of life. I know that there are a lot of other cancer centers that are now doing the same things, and praise God for them! But this was the facility that God used in my life.

 I had a treatment called Provenge, that tries to stimulate your white blood cells to fight the cancer, which didn't work. Also some pill and injection regimens, which worked for awhile. Then they put me on a chemo pill they call xtandi, (extandee), which not only didn't work, it made me sick as a dog. I literally thought it was going to kill me. They tried reducing my dose, but it didn't reduce my misery. Evidently, I'm a very rare case. Most people have good results with that, but not me. So there was no recourse, treatment wise, but for me to go on chemotherapy. Either that, or just ride it out to the end of the trail. So long story short, that's where I am today. I just finished up 12 chemo treatments, with good success, and they are giving my body a rest for awhile, don't know how long, just until my numbers start to climb back up. Could be 3 months, or a year or more, we will see. I also had to go into the hospital last year for breathinh issues. Turns out I now have COPD and congestive heart failure as well, so, I won't be in the Boston marathon this year, sorry...

I mentioned earlier that I would come back to something. You know, I could take a look at my story, and, on the surface, I could allow myself to become very bitter and depressed if I wanted to. No one would really blame me, and a lot of people choose to live in their circumstances that way. I don't want to do that. I have to tell you, that through all this God has never left me. I love Him, and He loves me. I know that if he doesn't cure me while I live down here, (He could, have no doubt about that please), He is going to cure me when he takes me home, That is an absolute promise right from His Word. The Bible tells us that  it is appointed unto man once to die. We are all in the same boat here. It may be cancer, my heart may give out, or maybe COPD will take my ability to breathe away. Or, maybe I'll just walk up to some gang banger and slap him and call him an idiot. But somehow, some way, I'm going to die. So are you. dear reader. The question is, what about after this life? Are you ready? Have you asked Christ into your heart? I have. It was the best decision I ever made. Don't put it off, do it now. Jesus loves you, just confess to Him you are a sinner, and ask Him to save you. I want to see you in Heaven. Ok, that's it for this time, see you soon, hopefully, before two years.