Wednesday, June 29, 2016

Tired Of Being Tired

I'm very tired today. It's a "good tired," though I'm not sure what a "bad tired" would be. Maybe being tired from staying up all night playing video games or something. I'm tired today, and will be every Wednesday until August because I'm working at something that I love very much on Mondays and Tuesdays for a couple of months. I'm not willing to give that up, so I just have to deal with being tired.

But I'm tired of being tired. I'm tired of not being able to do the things I want to do. I'm tired of having to pass on things that I would have jumped at a year ago because I just don't have the physical endurance that I used to have. All because of cancer and Lupron.

Lupron causes weakness, loss of muscle tone, and fatigue, among other things. I'm trying to work out every other day to counteract the loss of muscle tone, but at least once a week, I don't work out on days that I want to because I'm too tired. Today was one of those days. My first thought this morning, and the first thing I said to my wife after I got up was that I'm tired of being tired. I wanted to work out this morning, but I wouldn't have been able to get through it. Wednesdays have to be recovery days for me right now.

The job that I'm trying to do on Mondays and Tuesdays is mentoring and coaching kid singers, and helping them get ready for an upcoming performance. I love every minute of it. It's very special to me to be able to impart some of the knowledge and experience I've gained in my career to some young singers in their formative years. But I can't be there for all of their rehearsals, just because of my lack of endurance. I have to arrive late on Mondays and leave early on Tuesdays, and even then, I need to recover on Wednesdays. I'm so tired of being tired.

I used to stand at my desk rather than sitting for fitness and to avoid a repetitive stress issue I had a few years ago. But I can't do that very much now, because I get too tired. I hate that.

In two days, my wife retires from her job of 25 years. I'm throwing a small celebration for her at our favorite restaurant with a few close friends after her last day this Friday. Then on Saturday, we're hosting a monthly meeting with probably about 15 people at our home. On Sunday, I agreed to arrive early at church to help with hospitality. One year ago, the accumulation of these things would have been no problem. Now, I will be completely wiped out by Sunday afternoon, and will need about a three hour nap. I just hope that I'm not still too fatigued on Monday to do the work that I want and need to do.

This is a minor thing, but like many couples, my wife and I have TV shows that we watch together, and shows that we each watch alone. But because I get tired so easily, I can no longer stay up to watch "my shows" when she goes to bed, like I used to. I now go to bed around 8:00 PM, maybe 8:30, when I used to stay up until 10:00 or 10:30. I have a DVR full of shows that I'll probably never get to now. Not that that's a big sacrifice, especially when my priorities have changed so dramatically. But I still hate feeling like I have to go to bed so early.

I hate being tired all the time. But what choice do I have? None at all. I suppose that there are energy boosting supplements that I could take. I imagine I'll get a few suggestions about that in response to this post. I'm willing to try things, but I also can't take anything that will interfere with my ability to sleep. Sleep is of paramount importance. No Red Bull or 5 Hour Energy for me. I get "coffeed out" after three cups in the morning. Can't have any caffeine after 6:00 PM.

Fatigue shortens my fuse, which is already unnaturally short. Like an infant who cries when he or she is tired, tears and anger come all too easily when I'm fatigued. One more reason to hate being tired.

It's impossible for me to sleep in at my age. I also have a cat who makes me get up to feed her by 6:00 AM. But by that time, I've had maybe 10 hours of sleep, assuming I slept well that night. But no matter how much sleep I get, if I've expended too much energy the day or days before, I'm still walking around like a zombie for a day afterwards. Or two.

It seems to be getting worse as time goes on. I "hit the wall" at times after my first Lupron shot last September, but after my second shot in March, the fatigue problem increased. If I have to stay on Lupron for another year, how weak will I be then?

My hope and prayer is that, once I'm done with hormone treatment, my energy will bounce back. I'll be able to do some of the things I used to do. I hope that turns out to be true. Because right now, I'm really tired of being tired. #waroncancer

Sunday, June 26, 2016

The Okay Mask

We all wear masks at times. One mask that's very well-worn for many of us is The Okay Mask. It's the one we put on when we want people to think we're okay when we're really not. It's necessary to wear it in social situations, because, even though people ask us how we're doing, in most cases, they don't really want to know. They're just being polite. So we wear The Okay Mask, and tell people we're doing great. We act like nothing's wrong. It's how we get through the day.

If you have cancer, or if someone you love has it, you wear that mask around everyone but your inner circle. Some even wear it in front of those closest to them. Because if you looked the way you really felt, you'd make everyone feel sorry for you. So you wear the mask. It just makes things easier.

Or does it? Inevitably, at some point, the mask comes off. Sometimes it happens at the worst moment.

For me, much of the time, I'm not wearing the mask at all. When you ask how I'm feeling and I say I'm feeling good, I usually mean it. Most days recently, I'm in a pretty good place. But I had a really bad month not too long ago. You all witnessed it. I poured out my feelings about it in this blog, but around people who don't follow my journey, I wore the mask.

I put the mask on immediately after I got the phone call from my urologist telling me that I had cancer months ago. I was on my way out the door to drive a friend to a big gig he had that night. I was screaming inside, but I wore the mask for the whole evening, and didn't even tell my wife until we went to bed that night. I didn't want to spoil the fun, so I wore The Okay Mask.

Two weekends ago, when I was in the midst of one of the worst funks of my life, I had to put the mask on when we went out with friends on Saturday, and again when we went to church on Sunday. I don't want to ruin everyone else's time because I'm a wreck inside. Our social time on Saturday was with close friends, so they got the truth when they asked how I was doing. But that only lasted a few minutes, and then The Okay Mask went back on.

Since that terrible weekend, I've been much better. But I had one bad day this weekend, emotionally. Keep in mind that I'm talking about my emotional state, not anything physical. I still have no symptoms, other than from treatment. Those are bad enough. But, even with the 5-HTP supplement that has made a huge difference for me, some days something sets me off and I go straight down into a pit of misery. Even after the emotions pass, and I'm not wallowing in it anymore, I can still feel it. A knot inside that feels like a wound that's still tender. One that can flare up again at the slightest provocation. When I feel like that, I have to wear the mask.

If we know each other well, and I'm having a bad day, I'll probably tell you. But if we're not close, all you'll probably see is the mask. I know you're expressing concern, and you want to be supportive, but I may not feel comfortable exposing my drama to you. Around you, I need to wear the mask. I love you, and I appreciate the concern, but I don't want to go there. I can't go there with everyone. The cost is too high. The mask is much cheaper.

It's not just those who have cancer who have to wear The Okay Mask. Those closest to them wear it too. Cancer is often harder on a patient's loved ones than it is on them. If you have cancer, and are married, your spouse probably feels like they have to wear the mask around you. They think they need to stay positive to help keep your spirits up. Theirs is a burden that never goes away. If they let their guard down, they may feel like they're letting you down.

But wearing the mask too often is not good for us. We have to be able to let our guard down from time to time. We have to take the mask off and be vulnerable with someone. Otherwise, the emotional undertow will drown us eventually.

Again, I'm not always wearing the mask. Much of the time, even most of it, I really am okay. Great, actually. I might be tired, or having a hot flash, but I don't try to hide those things. It's the emotional baggage that needs to be covered up.

There's no point in saying that we shouldn't wear The Okay Mask. We all have to wear it sometimes. It's a matter of self-preservation. But if we love each other in spite of the mask, it gets easier to take the mask off. And what we need are people who love us even when the mask is lying crumpled and dirty on the floor, and all of our emotional ugliness is exposed. If you have at least one person like that, you should count yourself rich. I do, and I am.

Of course, I know that it's not just those dealing with cancer who wear The Okay Mask. Anytime we're going through some kind of difficulty and we need to be able to interact with people, we put it on. But with cancer, it seems to become a permanent part of our wardrobe. If you suspect that I'm not really as okay as I say I am, please just give me grace. Let me keep the mask on. It's not that I'm trying to keep things from you. I just need to protect myself. That's why I wear The Okay Mask. #waroncancer

Wednesday, June 22, 2016

The Things Cancer Teaches Us

My new dear friend Miki Chambers said something in her share of my last post this week. She said, "The things cancer teaches us..." That hit home with me. Cancer has taught me many things, and it continues to do so. Or should I say, I'm learning things because of cancer. I don't necessarily think that cancer is the teacher. For me, God is the teacher. Life is the teacher. But it took cancer to get me to listen.

I threw this question out today to the online support group that I mention so often. I asked what cancer has taught them. I could relate to pretty much every answer they gave. The uniformity of responses was amazing.

One said that cancer showed him that life can change in a single moment. Truer words were never spoken. I know that my life changed forever when I got that phone call from my urologist. That's when I got hit by God's 2 By 4, and nothing has been the same since.

Then he said something that was echoed by others. While cancer is a terrible thing, and it's certainly nothing that any of us would want for ourselves or a loved one, it can be a blessing. It has been in my life. If you've been reading this blog, you've had a front row seat for that. I am more abundantly blessed now than I've ever been in my life.

Another said that his faith in humanity has been restored. I can relate to that too. The basic goodness and generosity of people has been shown to me over and over.

Another common response is that different people react in different ways when they find out that you have cancer. Many are right there, supporting us from day one. Some back away, not knowing how to react. It's easy to see this as abandonment when you're the patient. But there are those who really do care, they just don't know what to say. And there are those who really don't care. That was the point of my last post. The one that inspired Miki's words. Some stop to help, and some pass by on the other side of the road.

One wise man that I've learned a lot from in this journey said that it taught him to remove all of the B.S. from his life. Only he used the actual word. Boy, is that one true! That's the clarity that Robert Cannady talks about. The way I've been putting it in this blog, cancer woke me up to what's really important, and what isn't. When you have cancer, your B.S. meter gets turned up full blast. And that's a very good thing. We can all use less of that in our lives. Especially in an election year!

When I posted the question today, one thing I said that I've learned is that I'm not in control. Others echoed that one. That's a sobering realization for many. It was for me. But that's where joy and peace are found, at least in my case. I suspect I'm not alone in that. For my whole life, I wanted control, and never had joy or peace. It's when I realized that I don't have control that joy and peace came flooding in.

What Pete Axson said is so good, I have to quote it word for word. "This journey taught me how to look forward to each day with awe and wonder - like we did as kids. It taught me how to live in the moment again. It taught me how to be kind to others - and to give them the opportunity to be kind to me. In short, it taught me how to live again. I have thought about this a lot. None of us ever wanted this, but if I was given the opportunity to do a rewind and give it all back - and lose all I have gained in the process, I don't think I would. Sounds crazy, I know." Wow. Exactly. I've been saying words to that effect from the beginning in this blog, but he said it better in one paragraph. Thanks for that, Pete.

Two people - both women, not surprisingly - said that they've learned to do their own research. Very important! Doctors don't know everything. They may not be up on all of the current treatments and clinical trials. They may have a financial interest in recommending certain treatments.

That leads into a related topic. It's our choice, as the patient, to pursue whatever treatment we want, or refuse any treatment that we don't want. Not the doctors, nor anyone else. We must be our own best advocate. Doctors work for us.

Some said that they learned that they are not alone. That rings true for me too. I've never felt less alone in my life.

Others said (and I've heard this many times) that prostate cancer is a couple's disease. That is so true. If you have it, or your spouse does, you're going through it together. That's true of all cancers, probably all disease. But prostate cancer in particular affects every aspect of a relationship. Intimacy is often a casualty of prostate cancer for many reasons, not all of them physical. Many men withdraw from their wives when they have this disease, and vice versa. It takes two to overcome that.

But the one who had the most to say about it was Miki herself. She echoed my last post regarding those who say they care, but don't show it. She was one who stressed the importance of research. Here are some other salient points she made.

She learned to find a support system. I have an amazing one, and I'm so happy that she's part of it.

She and others pointed out that every man with prostate cancer is different. That's certainly true of me! I'm more different than most. Every man reacts differently to treatment. Some with more aggressive cancer live a long time with it, and others with a lower grade cancer struggle. I know that my reaction to Lupron, for all of my complaints about it in this blog, has been mild compared to many. No two patients react the same way. Prostate cancer is a strange animal. Treating it is a shot in the dark, in many cases.

She also said she's learned to use cancer as an opportunity to educate. I like to think I'm doing that with this blog, in some small way.

But her last two points really spoke to me. She talked about learning to love people she's never met. I'd say been there, done that, but I'm there now, and doing it now. She's one of those people for me. Connections. Reconnections. The relationships are the best part of this, hands down.

Finally, she said that she's learned to become a better person. I can relate to that too. When you wake up to what's really important, that's what happens. Things come into focus. You learn not to sweat the small stuff. Contrary to the popular expression, it's not all small stuff. Cancer is not small. It's huge. But the clarity that it brings helps us to recognize the small stuff when we see it.

In addition to realizing that I don't have control, (and many other things) I learned a couple of other truths that I'd like to close with. First, as I've said many times before in this blog, and I'll continue to say, cancer taught me that I am loved. Before I went public with my diagnosis, I had no idea how much love there was out there for me. I wouldn't trade that knowledge now for anything.

And finally, because of cancer, I learned that God is real. I always believed that, and felt it at times, but cancer brought it home in an incredible way. Now I feel God's presence all the time, no matter what I'm doing. It's amazing. That makes it all worth it.

I could go on forever, and I almost did, as usual. But those are a few things that cancer teaches us. I wish it hadn't taken a cancer diagnosis to learn all of this, but as Pete said, if I was given the opportunity to do a rewind and give it all back - and lose all I have gained in the process, I don't think I would. #waroncancer

Sunday, June 19, 2016

Won't You Be My Neighbor?

Someone in an online prostate cancer support group that I'm a part of posted a meme last week that talked about how, when times are tough, you find out who really cares for you. Many responded to the post, because everyone in that group can relate. When you get cancer, you find out who your friends are. And who they aren't.

I was reminded this week of the Parable Of The Good Samaritan. Most of us are familiar with it. Even those with no church background or interest in the Bible have heard the term "Good Samaritan," and understand what the term means. Someone who helps a stranger in need out of the goodness of their heart is called a Good Samaritan. But if you didn't go to Sunday School as a kid, and have no interest in Christianity, you might not know the whole story.

It's not my intention to turn this post into a Bible lesson. I just want to show how the story has played out in my cancer journey, and that of many others. If you want an in depth analysis of the story from a Biblical perspective, I recommend my Bible blog post on Luke 10:25-37.

When Jesus told this story, it was in answer to a question. The person asking knew that Jewish law required him to love his neighbor as himself. What he wanted to know was, who was his neighbor? In other words, who was he required to love, and who was he allowed to ignore, or even hate. So Jesus answered his question with this famous story.

To loosely paraphrase, a man was walking from one city to another, down a well traveled road. But in the ancient world, bandits on the road were a common danger. Some bandits attacked the man, robbed and beat him, and left him for dead. While he lay there, a priest walked by. The priest ignored the man, and passed him by on the other side of the road.

Then a Levite, who worked in the temple, also passed by on the other side of the road. Pretended not to see the victim lying there, just as the priest had.

Then a member of a hated minority, a Samaritan, came by. He was the last person that someone in that culture would expect to stop and help. He was someone that none of Jesus' disciples or listeners would have helped. But the hated Samaritan bound up the man's wounds, put him on the back of his own donkey, which meant he walked the rest of the way, and paid for the man to stay in an inn until he recovered. He stayed with the victim for the whole night and took care of him to make sure he was OK.

After telling the story, Jesus asked which of the three had been a neighbor to the victim. "The one who had mercy on him," the guy said. Hence the term, "Good Samaritan."

I've heard this story my whole life, and have studied it extensively. But until now, I always saw myself as one of the three who walked by the victim. I hoped that I would be like the Samaritan. I hoped that I would be a neighbor to those in need. But most of the time, I wasn't. In fact, I was much more like the Levite. I worked in the church. I led worship. That's the equivalent of a Levite in Christian churches. And like the Levite in the parable, too often, I passed by on the other side of the road.

But now, I no longer see myself as the Levite in the story. I'm not the Samaritan either. I'm the victim. And like so many in need, I have watched in amazement at those who stop to help, and those who pass by on the other side of the road.

Friends I thought were members of my inner circle disappeared when I told them I had cancer. Even the one who I thought of as my pastor at the time (the equivalent of the priest in the story) abandoned me in my hour of greatest need.

But I deserved no better, because of my own lack of concern for the needs of others for so many years. For decades, I had been like the priest and the Levite. I had my own concerns, and they were my priority. As my good friend said recently, I seemed to only care about myself and my music.

And this is where grace comes in. The priests and Levites in my life were few. As it turned out, I had a whole multitude of Good Samaritans that I knew nothing about. Neighbors. You loved me as yourselves. In spite of the fact that I had not loved you in the same way. Grace. Undeserved favor.

Unlike the victim in the parable, my wounds are not temporary. They require ongoing care, and will for a long time. So my neighbors keep stopping to help.

The victim in the parable and the Samaritan were not friends. In that culture, that would have been unthinkable. Likewise, many who never met me personally have volunteered to help, both materially and emotionally. Most of the friendships I had before my diagnosis have deepened since. Some relationships have taken on new life and meaning.

I received a generous gift of support from a partner in ministry just two days ago, totally out of the blue. I've received friendship and love from people who I never expected to hear from. And I learned what real friendship is from a few. When I think about them, I realize that just about every one has gone through a terrible trial in their own lives. When you're the victim, you learn how important it is to be a neighbor.

Since my diagnosis, I've learned who my neighbors are. And I've watched those who passed by on the other side of the road. If they read this blog, they'd know who they are, but of course, they don't. If I was still a Levite, I wouldn't be reading a blog like this either. I'd be too worried about making good time getting where I was going.

I'm trying to learn to be a neighbor to those I know who are in need. Even when you're still a victim, you can find ways to be a neighbor to someone.

I used to really want to be a Levite. A big shot in the church. A well known worship leader. Now I have no interest in being that guy. I'd honestly rather be the victim, lying battered and bloodied by the side of the road. What really gets me is, many of you were a neighbor to me when you knew full well what I was before I got attacked by a bandit called cancer. But you loved and supported me anyway. That's what grace is. That's what love is. That's being a neighbor. In the words of Fred Rogers, won't you be my neighbor? #waroncancer

Wednesday, June 15, 2016

Cancer Brings Clarity

Much of the content of this blog has been devoted to the changes that cancer has brought to my life. Many of them bad, to be sure, but many good things too. One good thing I keep talking about is the change in perspective that it's brought about. My new friend Robert Cannady put it perfectly yesterday. He said, "I am grateful for the clarity that cancer has brought to my life." That's the word. Clarity. Cancer brings clarity. I want to talk about that in this post. But first, I should update you.

Since my last post, things have gotten better. My last post was written on Friday, the day after I learned that I had fought a losing battle to keep Medicaid coverage. A month of turmoil for no result. But in a comment on my last post, the aforementioned Robert Cannady reminded me that maybe my struggle wasn't just about me. Maybe my telling the world about it (which is what I do these days) will help someone else. I hope that's true.

Saturday was just as bad as Friday for me, emotionally speaking. But Sunday morning, it seemed that the clouds parted. I felt much better. My wife and I went to church, and that did me a world of good. I can't tell you how much more meaningful church is for me now than it used to be, back when church was a gig. Now that I'm no longer responsible for making sure the service goes smoothly, and I don't have to learn any music or attend any rehearsals, sound checks, or staff meetings, I can just take it all in, and it's wonderful. It's tonic for the soul.

But my mood had improved before I even got to church. I attribute the change to two things. First, I have many people praying for me. As I've said several times before in this blog, for the first time in my life, I can feel people's prayers. I've heard people say that about themselves many times, but I've never understood it until recently. When that many people are praying for you every day (hundreds in my case, maybe more, all over the world) it's hard to stay in a funk.

But it's also true that I've never been able to stay in a bad mood for long. That's the other thing I attribute the change to. The upbeat, basically happy nature that I've been blessed to have all my life. When I took the Mood Cure test back in April, while I was in the throes of Lupron induced mood swings and anger issues, I scored high in the "Under A Dark Cloud" category. I've never been an Under A Dark Cloud type of person until Lupron took over my life. The 5-HTP supplement that I began taking at the behest of one of my best friends changed that, for the most part. It took a month of frustration and defeat to bring it back for a few days. But thank God, it's gone now.

I enrolled in an insurance plan Monday. It goes into effect July 1st. Our premiums are very low, thanks to a generous tax credit. My appointment with my oncologist will be rescheduled for sometime in July. Thanks to the generosity of friends, I don't have to worry about paying towards the deductible, at least for now. Life is good.

But as I sit here and write about the good things in my life, I can't help but think of loved ones who are going through much worse things than I am, at least for today. I think of one friend who I took to the emergency room yesterday, suddenly and unexpectedly. She had surgery last night. I can't stop praying for her. I think of another who was here recording last night, and as soon as she left, went to check on her mom who is in the hospital again. She's been praying for me for months, and I for her family.

In both cases, we were together for musical reasons. For work. But friendship took over when it counted. Because cancer brings clarity. Things become very clear when you get hit by God's 2 by 4. The main thing that's been made clear to me by this calamity is the simple and obvious fact that the people in my life are what's really important. I didn't get that when I was the guy who only cared about myself and my music. That's why I wouldn't change my diagnosis, even if I could. If not for cancer, I'd still be that guy.

If not for cancer, I would never have been at my friend's house yesterday, and would not have been available to take anyone to the ER.

If not for cancer, I wouldn't be enjoying church as much as I am. I wouldn't be praying for my friends like I am. Cancer brings clarity. 

I'm thankful that I was able to escape the dark cloud I was under this past weekend. I'm thankful that I have insurance, and that I'll be able to see my doctor soon.

I'm thankful that I was able to help someone today. Someone I care for very much. I'm thankful for the friend who came to sing with my wife and me for a recording yesterday, and for the time we were able to share.

I'm thankful that these posts are helpful to people. It means more than I can express when someone tells me that something I wrote helped them in some way.

But to paraphrase Robert, I'm really thankful for the clarity that cancer has brought to my life. I'm thankful to finally be able to see what's right in front of me. What's really important. That's what matters. None of the rest of it happens without that.

Life has changed for me in so many ways. Every cancer brother and sister I have out there can attest to this in their own lives. The old things have passed away, and behold, all things have become new. (2 Corinthians 5:17)

Things are clearer to me than they've ever been before. Cancer brings clarity. #waroncancer

Friday, June 10, 2016

Precious Time

This is my first post in seven days. That's the longest period of time I've had between posts since I started last October. I hate going that long without posting, but I've had good reason. For one, I've wanted to wait until I had definitive word about my Medicaid coverage. For another, I haven't had time. Between the work I have to finish and the amount of time and energy I had to waste fighting to keep my coverage, there has been no time for writing.

Time. I've long regarded time as the most precious commodity there is. That's especially true for me now. For decades I've said that time is much more expensive than money. We can always make more money, but none of us can get more time. And we tend to think we own the time that we have. I believe it was in The Screwtape Letters that C.S. Lewis said that people tend to think we are the lawful owners of 24 hours per day. If someone interferes with our plans, they're wasting "our time."

Naturally, in my situation, time has become even more precious. It's an even bigger temptation to be jealous of "my time." I want to make the most of whatever amount of time I have. But over the course of the last month, I've wasted a lot of precious time fighting a losing battle. I've wasted time that I couldn't afford to waste, and I feel very discouraged because of it.

I learned the full reasons why we were disqualified for Medicaid yesterday by spending the afternoon at the main local office, speaking to an "eligibility technician." I can't go into detail without revealing private information, but I learned that I can reapply soon, and will be approved if I do. However, I also learned what the income threshold is to qualify, and I learned last night that we can't live on that little and survive.

Here's the key distinction between Medicaid eligibility and other U.S. government standards, like what's taxable, and what disqualifies one from disability benefits. Neither disability nor the IRS count financial gifts against you. But Medicaid does. I learned that yesterday. We don't have to report the money that was contributed recently to our GoFundMe campaign on our taxes for this year, but I would have to report it to Medicaid. Everything counts with them. That alone makes it impossible for us to live on the amount that would qualify us.

So we have no choice but to enroll in a private health insurance plan. We will get a substantial subsidy, which will make our premiums low, but there's no subsidy for the deductible. As I was wasting time fighting this for the past few weeks, I asked each person I talked to about this how I was supposed to pay out of pocket for treatment until my deductible is reached, given my income, which they had in front of them. None of them had an answer.

But it was when I learned that it was futile to try for Medicaid coverage again because we can't afford to live on the amount we'd have to limit ourselves to that I felt that all of the effort, emotional upheaval, and precious time I'd spent had been for nothing. I could have enrolled in one of the plans that are available a month ago, and skipped all of this grief. But I felt I had to fight it. As a result, I am discouraged. I feel like giving up.

In addition to the deductible I have to meet, the company that my therapist works for doesn't take private insurance. Only Medicaid. I have help from a good friend to pay for my therapy, but I don't feel like I should ask him to pay for that for very long. I never planned to be in therapy for that long anyway, but now I feel like I need to set a time limit for it. Maybe that's a good thing, long term. But it doesn't feel good to me right now. After the month I've had, I need therapy.

Before I go on feeling sorry for myself, I should remind myself of what's happened in the past two weeks. I need to count some blessings.

First, the financial support that I've received should serve as confirmation that I don't need to worry about meeting my deductible. God will provide.

Second, let me talk a little about last Monday, and how positive it was in the middle of all of this negativity. This past Monday began with an incredible face to face and heart to heart time with someone who has been very precious to me since she was two years old. Today she's 30. Yes, I am old. If I try really hard to see past my discouragement today, I can still feel the emotional impact of that time. Precious time. Monday ended with dinner with some very close friends, and our conversation was all about an exciting trip we're going on together six or seven months from now. I still know that I am loved. The Love Part is still good. It's the best part of all of this.

I almost wrote this post last night, when I was really feeling down, even more than I am now. The title I had for it involved a swear word. If you think this post has been negative, it's been sweetness and light compared to what I would have written last night. I joked to my wife that it would have been my most popular post ever. When I look at what my top ten all time posts are in this blog, all but two of them are what I would consider "negative" posts. More positive posts like my last post, The Love Part, don't get as much traffic. I find that interesting.

What I am discouraged about is not that I have to get private insurance and meet a deductible. It's already been made clear to me that I don't need to worry about that. What I'm discouraged about is the precious time that was wasted, which I can't afford. It's time that I'll never get back.

I'm also discouraged about the emotional turmoil that I needlessly put myself through arguing with people about this. People whose job is customer service, and who had compassion for my situation, but whose hands were tied by the rules they have to enforce. In the end, all of the distress I put myself through was for nothing. I was like Don Quixote tilting at windmills. In my emotional state, that was not good. I put myself through a month of grief for nothing.

I believe that God will make something good out of this. I believe that, when I look back on this time, I will see that God was at work. But it's hard for me to feel that right now. Precious time was wasted. When you believe that you may only have a few years left, one month is really expensive. I have to take that into account before I try to rage against the machine again. Time is precious. I can't afford to waste any more of it. #waroncancer

Saturday, June 4, 2016

The Love Part

Not long after I went public with my diagnosis, I was talking with a guy at church who had undergone cancer treatment. We were commiserating about the various aspects of our journeys. At that point, I had no symptoms, and was new to hormone treatment. My main impression of life with cancer then was the outpouring of love and support that I had received. I said this to my friend, and he replied, "Oh yeah, the love part's great!" The rest may be tough to deal with, but The Love Part makes it all worthwhile.

That's certainly been my experience so far. I've talked about it a lot. I keep experiencing it in different ways. This past week has been a prime example.

I've talked about the financial support that came as a real surprise to us a week ago. We've received additional support since then from a close friend. Someone who I haven't seen or talked to very often for the past 35 years, but who wants to do whatever he can for me now. The Love Part.

I've made new friends since I began blogging about my cancer. One lives close to me, though we still haven't met face to face. One lives in Michigan. We went to high school together, but never actually met. The other is a couple in Arkansas. The love and connection I feel with these new friends is a constant source of encouragement to me. I hope I am the same to them. These are friendships I would not have today were it not for cancer. The Love Part again.

Reconnections with long standing friendships has been a running theme in this blog since I started. Almost all of my friendships have gotten closer since my diagnosis. I used to be able count the number of close friends I had on the fingers of one hand. Now it takes both hands and at least one foot. Good thing it's sandal season.

One of my best friends (who only recently became a "best" friend by being a nonstop source of encouragement since my diagnosis) gave me a very frank description this week of what I was like before cancer. It wasn't a very flattering picture, and it was spot on. What amazed me is that she loved me anyway, in spite of the fact that, to paraphrase, I seemed to only care about myself and my music. She knew me well. That pretty much was all I cared about before I got hit by God's 2 By 4.

That's why I've been so blown away by the love that I've received. I don't deserve it. As I said in my post, "Reconnecting," I haven't given love in anywhere near the amounts that I'm receiving now. Who could deserve this amount of love? Mother Teresa, maybe? I'm no Mother Teresa. But just like my dear friend, you loved me anyway. Many of you had never met me, and probably never will. But you loved me anyway. You show it with your prayers, your encouraging comments, and the calls, texts, messages, and cards that continue to come. That's what I call The Love Part.

One of the people that I love most, who lives far away, is in town this weekend. We're meeting for brunch on Monday. I'm so excited about it that I can hardly stand myself. Also, I got some very exciting news from another very dear friend yesterday. Just about the best news I could have gotten from anyone. I was feeling sorry for myself about my inability to see certain friends, and then I got that call. The exact call I needed at the exact right time. God is good. The Love Part comes from him.

Before I wrap this post up, I should update you on my situation. My appointment with my oncologist on Tuesday, June 7th has been cancelled. I haven't heard anything about my Medicaid status yet. Since no treatment was planned for this visit, it's better to wait until I have some kind of coverage. I'll reschedule for sometime in July, after my insurance is worked out and in place. That's a bit disappointing to me, but only because I wanted to have actual medical news to tell you about!

But while those kinds of issues are frustrating to me, even my struggles bring out The Love Part. The expressions of anger, frustration, and genuine concern I've received from some of you have really lifted my spirits. When I'm angry about something, somehow, it really helps when others are angry about it too! Not just angry at the issue, but angry on my behalf. That's The Love Part again.

I keep saying it, and I won't stop until I something stops me. Thank you for all of the love. It's undeserved favor, which is the definition of grace. I don't deserve it, but you keep giving it. Cancer is bad, but The Love Part's great. #waroncancer

Wednesday, June 1, 2016

The Post I Wanted To Write

I didn't get to write the post I wanted to write yesterday. It would have been really inspiring, too. But events didn't cooperate.

My Medicaid coverage ended yesterday. I'm hopeful that it will be reinstated by the end of this week. But that will be cutting it close when it comes to keeping my appointment with my oncologist this Tuesday. I'm supposed to get a blood draw to check my PSA before I go in. But without coverage, that's proving to be a problem.

I've mentioned before in this blog that, when I first went public with my diagnosis, I set up a GoFundMe campaign to help us with medical and living expenses. That campaign quickly exceeded its goal. It was an amazing display of love and support, and my wife and I will always be grateful for it. That money kept us afloat financially for five months. But it's long gone now.

Since then, I haven't felt like I could go back to that well again. So I haven't promoted the campaign at all, other than keeping a widget for it on my website and this blog. But I also didn't feel like I should close it. Then, something unexpected happened last weekend. Out of the blue, we received four donations within 24 hours. I felt strongly that this was God's way of providing for the medical appointments I have scheduled.

I called my oncologist's office to tell them I had lost my coverage. I wanted to know what it would cost for me to pay out of pocket for my blood draw and oncologist's appointment. They wouldn't tell me. They won't even work with me unless I have insurance.

I was sure that they would give me an amount for the PSA test and appointment, and that the amount that was contributed would be just enough to pay for it. That's the post I wanted to write yesterday. A post about God's faithfulness. I knew Medicaid wouldn't come through that fast, but I thought I'd been given what I needed to get by until it does, if it does.

If I'm still ruled ineligible for Medicaid, then I'll be forced onto private insurance with a high deductible. Maybe that's what this money is for. It won't be touched for anything but medical expenses. If it turns out that those contributions equal what I have to pay towards my deductible at that time, I will shout it from the rooftops in this blog. If I end up back on Medicaid, that money will go to naturopathic treatment.

As I've said before in this blog, if you live outside the U.S., you must think it's crazy that we even have to think about money when it comes to medical treatment here. You would be right. But that's the way it is, and it's not likely to change anytime soon. I think it will change someday, but not in time for me.

Each step of the way, I'm being taught about trusting God. When my disability was denied, I had to trust God. And one very good friend. Now, without insurance, I have to trust God again. And he just keeps coming through.

So I didn't get to write the post I was hoping to write. But there are lots of posts I'd like to write, but can't. I'd like to post that I won the lottery. But I don't buy lottery tickets anymore. I used to buy Powerball or Mega Millions or both, almost every week. But now I don't. Do you want to know why? It's not that I think there's anything wrong with it. It's not because it's a waste of money that I can't afford to lose, even though it is. I've heard it referred to as "the idiot tax."

No, the reason I don't buy lottery tickets anymore is that if I won I'm afraid that I'd lose the motivation to keep writing my story. I'd rather keep doing this than win the lottery. I've never said that about my lifelong passion, music. But it's true of this blog.

I'd love to write a post in tribute to one person who has been an unbelievable friend to me since this started. But this blog has grown to the point that I don't feel like I can do that anymore. There are too many strangers reading it. I'll have to do that privately at some point.

And of course, I'd love to write a post saying that I'm cancer free. That may happen sooner than you think. If you read my last post, you know that I intend to delay my next Lupron shot to see if my PSA rises. If it doesn't rise by the end of this year, or at some interval determined by my oncologist, I'll get another biopsy done to see if I still have cancer. So that post may yet be written. Stay tuned.

But for today, you're stuck with this post. Inspiration has been a little hard to come by lately. I suspect that it's because of the 5-HTP supplement I've been taking to control my moods. 5-HTP does a good job of suppressing negative emotions like anger and irritability, but it also seems to suppress the good emotions, at least for me. God doesn't seem as close as he did when my emotions were just below the surface. And in my interpersonal relationships, things have cooled off as well. I don't feel the anger as much, but I also don't feel the love as much.

I will update when I know more about my coverage. But I didn't feel like I could wait until then to post. I want to write even when I don't have much to write about. I'm just happy, and thankful, and amazed that you want to read what I write. Even when it isn't the post I wanted to write. #waroncancer