Thursday, May 26, 2016

OK Either Way

I've been spending much of this week trying to get my Medicaid coverage reinstated. As of now, it's still supposed to terminate at the end of this month. Here's what seems to have happened.

In Colorado, USA, we have an online state health care exchange. Many insurance companies sell policies on the exchange, and if you don't qualify for Medicaid, you choose from one of those plans. Hopefully, based on your income, you get some kind of subsidy. For 2014 and 2015, we had private health insurance with a high deductible. We got a subsidy to help with our premiums. But this year, since I make so little, and with my business expenses, my business actually runs at a loss, we qualified for Medicaid. Until recently.

It's not that I've made any more than I estimated at the end of last year. My income has been exactly what I expected. The problem seems to be that the government can't seem to wrap their heads around the fact that I'm self employed, even though I've been filing my taxes that way since 1988. I don't get a steady paycheck. I have clients who pay on time sometimes, but not all of the time.

My two remaining clients that pay me my monthly income are radio stations. I write and produce song parodies for radio. Topical stuff, mostly. I do a parody each week for them, and get paid by the month. The problem with radio stations is that invoices frequently get lost, or skipped, or paid late. So some months I get less, others more. It all depends on when they decide to pay. And every December, no one is in the office for the last two weeks of the year. So nothing gets paid in January. They catch up in February. I've dealt with that for my entire career. You just have to plan for it.

That's what happened this year. Nothing in January, but I got paid double in February. Actually, it was more than that, because one station also paid an old invoice from last November that had gotten lost. So my deposit in February was more than twice what it should have been. That apparently raised a red flag, and they decided I was making too much money.

When I went to the local Medicaid office to ask about it, I was told that Medicaid averages your income out for the year, but the Department Of Labor goes month to month. They sent the notification to Medicaid that I was too rich. I guess it's too much to expect that all of the agencies that are affected by this would use the same rules.

So I ended up back on the phone with Connect For Health Colorado this afternoon. That's the name of our state health care exchange. A very nice guy stayed on the phone with me and took down all of our financial information. He thinks we should be able to stay on Medicaid, but he couldn't get it to go through because of some computer hangup. I almost told him to get a Mac, but I was nice. He had to create a ticket, which they will hopefully follow through on before my coverage runs out.

Even though I'm working as hard as I can to keep our coverage, I'm at peace with whatever happens, as I keep saying. I'd like to see my oncologist on July 7th like I'm scheduled to, but if not, that's OK. It's just a consultation. I'm supposed to get my PSA tested beforehand, and then meet with the doctor to discuss where we are. No treatment is planned for this visit. My next Lupron shot isn't scheduled until September. So I have some time.

As I said in a previous post, the one thing I'll really miss if I lose coverage is seeing my therapist. She takes Medicaid, which many good practitioners don't because Medicaid doesn't reimburse well, or in a timely manner, and it's a constant headache to deal with. I can relate to that! But she is one of the ones who does take it, and she's been really great. Therapy has done me a lot of good, and I've only had five sessions. But I can live without that if I have to.

If I lose Medicaid, and am forced onto a private health insurance plan for the rest of the year, I will probably abandon conventional treatment, at least for now. I can't pay out of pocket for treatment until I hit my deductible. That's just not possible. And I don't feel like I can ask for more help than has already been offered.

If you've been reading my recent posts, you know where I'm at with conventional treatment anyway. I'm fine with staying on Lupron for as long as it keeps working, as long as it's covered, and as long as I can keep taking 5-HTP to counteract the emotional volatility. But I am not paying out of pocket for a drug that has so many negative effects on my body. I'd rather just trust God for my healing than do that. I'd rather try naturopathic treatment than do that too, and I plan to do just that. I have help to pay for that, for which I am very grateful.

Here's the thing about trusting God in this context, at least to me. I know that many don't like the fact that I frame it that way. I don't mean to imply that if you seek standard treatment, you don't trust God. But I feel like I can trust God for this. I have so many people praying and believing for my healing, I'd like to at least see if I'm healed. If I lose coverage, my plan is to simply get my PSA checked every month. If, by the end of the year, it still hasn't risen, I'll use whatever coverage I have next year to get a second biopsy. My last PSA was 1.42, down from 15.8 before I got my first shot.

In case you haven't been following along or don't know, PSA is a protein produced by the prostate gland. They measure how much PSA is in your bloodstream with the PSA test. Any number above 4.00 is considered abnormal. As long as my PSA number stays the same or goes down, I'm in good shape. Once it starts going up again, I'm in trouble.

Lupron has been holding my PSA down. After my first shot, my number went down to 4.00. Just before my second shot, it was 1.42. Since Lupron is keeping my number low, I have no idea whether God has healed me or not. And make no mistake, I believe that he can heal me if he chooses to. But it's his choice, and I'm fine with whatever he has decided. But I'd like to find out. I don't really want any more Lupron shots if I'm healed, whether they're covered or not.

If Medicaid stays in place, I intend to ask my oncologist if he thinks it would be too big a risk to delay my next shot and just keep testing until my PSA starts rising again. If it does, I'll get the next shot. If not, I'll get that biopsy and see if I still have cancer. If I lose Medicaid, I'll get my PSA tested on my own. If my PSA shoots up and I have no insurance, or a high deductible, I'll seek naturopathic treatment.

I've already gone through losing disability. If you haven't read about that, check out my most depressing post ever, and my most viewed post, (go figure) Full Disclosure. Losing disability was a much more crushing blow than this would be. If you've been reading this blog, you know that my first choice would be to abandon traditional medicine and trust God for everything, including my life. Losing Medicaid, for me, would be a green light to do just that. I'll take it as a sign.

So as I keep saying, I'm OK either way. I'm OK with insurance or without it. I'm OK whether God heals me or takes me home. I don't want to fight. Except with the government. I still feel that nobody should have to bankrupt themselves to stay alive, especially when so many are using up their retirement savings to pay for treatment, which should be there for them to live on, or at least support their families in the event of their death. It's not right. Someone needs to tell me what's Christlike about the system that we have in this country. So even though it's not that big a deal to me if I lose Medicaid, because I'm not interested in most of the treatments that insurance covers, I will still fight for what I believe I'm entitled to.

One really cool thing happened today, though, that I want to tell you about. Long time readers know that I struggled with weight loss from my cancer, or Lupron, or both. My weight, which should be right at 130, dropped down to 120 for a while. I saw a nutritionist to learn how to gain weight, which has always been very difficult for me. The nutritionist that I saw, a young woman I call Katie for the purposes of this blog, gave me some recommendations.

During our conversation, the subject of my homemade dark chocolate ice cream came up. That tends to happen, in case you hadn't noticed. She thought it sounded really good, which it is. So I decided then and there that if her program worked for me, I would take her some ice cream. As you know if you've been paying attention, I've gained 11 pounds since then. I've been holding at 131 for about three weeks.

So I tried to make an ice cream run a couple of weeks ago, but she was on vacation. Today was her first day back, so I went over to her office with a cooler of chocolate heaven this afternoon. I was glad that she remembered me. She was glad that I had gained so much weight in so little time. And she was very glad to get the ice cream. She even asked about my dog's knee surgery! What a nice person. I was really happy to finally be able to do that. It was the highlight of my day.

My nutritionist's services were paid for by Medicaid, of course. If I had had to pay for that out of pocket, I probably wouldn't have done it, and I'd still be struggling to stay above 120. Now, since it seems like I have a handle on things, it's OK if I don't need katie again.

Likewise, since I know what I'd like to do next with regard to treatment, it's OK if I don't have coverage for that. If it means I get one or two less Lupron shots and have to accelerate my plan to go naturopathic, that's fine with me. For all I know, I might be cancer free right now, and don't even know it.

I've never understood, let alone practiced this passage of scripture before, but it really rings true to me now.

I am not saying this because I am in need, for I have learned to be content whatever the circumstances. I know what it is to be in need, and I know what it is to have plenty. I have learned the secret of being content in any and every situation, whether well fed or hungry, whether living in plenty or in want. I can do all this through him who gives me strength. (Philippians 4:11-13)

So whether I keep coverage or lose it, and whether I live or die, I'm at peace. I'm OK either way. #waroncancer

Monday, May 23, 2016

Pacing Myself

It's taken me some time to learn that, while going through cancer treatment, I have to pace myself. I can't do all of the things I used to do. At least not at the same time, or back-to-back. This means giving up some things that are very important to me.

I've been learning this lesson for a while now. Last February, there was a reunion concert for a band that I was in for three years, from 2009 to 2011. I was able to be part of it, but only part. I couldn't get through rehearsals like I used to. That was an eye opener for me. But I already knew at that point that my career being in bands was on hiatus, at the very least.

That experience made me realize that, even if a gig opened up for me, whether it be a position in a band, or a worship leading position in a church, it isn't something that I can commit to while I'm in treatment, if ever. But to be honest, that's a little bit like saying I'm unavailable to play quarterback for the Denver Broncos. And they could use one! There's about as much interest in my services as a lead singer or worship leader right now as there would be from the NFL. Another reason to believe that I'm supposed to do something else right now.

By the way, what a great blessing it is to feel like I do have something God wants me to do, and it's the exact thing I'm the most excited about doing. I know guys who are in my situation, vocationally, who don't have that. I'm very grateful to have this new passion. It makes it a lot easier to let go of the old one.

There are other passions that I don't think I'll ever lose, but that I still have to let go of, at least somewhat. I keep saying in this blog that many, if not most of my relationships have risen to a new level since my diagnosis. I crave contact with my friends in a way that I never have before. But our social calendar, which has been very active in recent months, has started to take a toll on me.

In my recent post, "The Bad With The Good," I talked about a gathering with friends on Saturday that made me too tired to attend a barbecue the next evening. A year ago, that would have been no problem. My life prior to Lupron. And the social engagement we attended last Saturday was at a friend's house, not at ours. Even so, I paid a price for it the next day.

This past weekend was worse. On Saturday, we had two couples over for dinner at our house. It was a wonderful time with friends who are very dear to us. But hosting is a lot of work. This is the exact sort of thing that my wife and I have always loved doing. We love entertaining. It's something that I'm very reluctant to give up, or even cut back on. But today, it seems that I have little choice.

We had so much fun with our friends on Saturday that we didn't realize how late it had gotten. 11:00 PM may not seem that late to you, but once our company had left around then, we didn't have the energy to do any cleaning up. It was very hard to get up and go to church Sunday morning, but we did. I took a two hour nap Sunday afternoon, and slept another seven hours last night, but I'm still dragging today. I still haven't recovered from Saturday night.

No, I wasn't hung over, in case you're wondering! I never drink that much. I'm a total lightweight when it comes to alcohol. I just get very tired very quickly, and it takes me a long time to recover.

This led me to a difficult conclusion today. We can't keep entertaining like we have been for so many years. I love being with my friends. I need to see them. But it's too difficult to entertain now. It takes more work than I can give, especially for larger parties. I'm glad our friends enjoyed our dinner party, and we did too. It will probably be our last one for a while.

This is especially true now, while I'm trying to finish the music work that I have left to do. Tomorrow I'm finishing my first project of the four I have remaining. After it's finished, I have another project that I have to finish in three to four weeks. God grant me the endurance and focus to get it done on time!

After that, I'll get a chance to exhale a bit. I'll be able to pace myself like I can't right now. But there will still be more work to do. I won't be able to completely retire until spring of 2017.

It's much easier for me to think about retiring from music than give up having friends over. My music career is dying of its own accord. Rather than stressing over the fact that I can't get a gig, it's easy for me to see the lack of potential work as a door closing. Before I was diagnosed, the fact that no church would hire me at 60 years old was a source of stress. After my diagnosis, it made sense.

But my desire to see my friends only increased after I knew I had cancer. It became clear to me how important these relationships are, and now I want to pursue them with all of my heart. They are a huge priority for me now. Which makes the fact that I can't physically do the work of hosting that much anymore heartbreaking. But I have to pace myself. I have to be realistic about how much I can actually do.

This applies to all of my plans. Every year in November, I participate in a progressive rock festival in Denver. This year, I had big plans. Now my plans will have to be more modest. I was planning on being involved in four different sets. Now I'll have to cut it down to one or two. I can't overcommit.

You see, one of the purposes of this festival is to give the musicians in the group a chance to perform songs they've always wanted to play. I've been looking down the road and wondering if I'll feel up to doing anything at all three or four years from now. That makes me want to try to do as much as I can while I can. But it may not be possible to check every item off of my bucket list. I have to prioritize. I have to pace myself.

It's not easy giving up things that are so meaningful. But even Peyton Manning had to retire, and so must I. Like Peyton, my body won't let me do the things I used to do.

This doesn't mean that I'll never perform again. It doesn't mean that we'll completely stop entertaining. But it does mean that we have to cut way down on those things. If you don't get an invitation from us, it doesn't mean that we don't love you. It just means that I'm pacing myself. If you want to see us, it might be on you to make it happen. I still want to see my friends. I want to see you so much it hurts. I just don't have the energy to throw the kind of shindigs we've become known for among our friends.

The spirit is willing, but the flesh is weak. (Matthew 26:41) As the above image says, I am strong, but I am tired. I hope that, tomorrow, I'll feel more like myself. But for that to happen, I have to make sure I get the rest that I need. I have to make sure to pace myself over the next few weeks, even while under pressure to get work done. I have to keep reminding myself that I'm not the guy I used to be, for good and ill. Good and ill. There's a whole lot of good, but I am ill.

But I still have joy. And the joy of the Lord is my strength. (Nehemiah 8:10)

“My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly about my weaknesses, so that Christ’s power may rest on me. (2 Corinthians 12:9) #waroncancer

Friday, May 20, 2016

Cancer Peacenik

I've heard the term "Cancer Warrior" a lot recently. It sounds much better than "patient." Definitely better than "victim" or "survivor." It implies that you're a fighter. I totally get that. And of course, I've recently become part of I'm proud to be one of their "warriors." I'm very pleased and excited to be part of this new platform. The trouble is, I don't feel like much of a warrior.

I've never been a fighter. I've always been more of a pacifist. If you and I have been in an argument, you might disagree with that statement, but I'm talking about actual physical fighting. I've always been skinny and non-athletic. In school, I avoided fighting, because I could never win. I was known as the kid that you could easily pick on. And I was picked on. I was bullied throughout my teenage years.

Thankfully, as an adult, I don't think I've ever been threatened with physical violence, or ever inflicted violence on another person. I don't believe I've ever struck another person in anger. In matters of war and peace, I tend to be a "peacenik," to use a term from the 1960's. Yes, I'm an aging hippie. Guilty as charged.

I seem to have the same attitude toward my cancer. As I've said before in this blog, my instinct is not to fight, but to accept. I am getting the recommended treatment for my cancer at this point, and so far, it appears to be working. So it's not like I'm doing nothing. But there is a limit to how far I'm willing to go with treatment. There's a limit to how hard I'm willing to fight.

Among the cancer patients that I know and have had contact with online, I am in the minority. Most others with cancer are fighters. That's certainly understandable, especially if you're young. The survival instinct is overpowering in most living things. Maybe mine will kick in someday. But for now, I am at peace with whatever happens.

I know people who, as soon as they were diagnosed, wanted to get the cancer out of their bodies as quickly as they could. But they were all operable. I'm not. There are treatments that my doctors tell me could "get it all," but I don't believe them. I know people who thought they had gotten all of the cancer out of their bodies, only to have it return. As aggressive as my cancer is, I doubt that it's really possible to kill all of it with conventional treatment. I've seen too many instances where that turned out not to be true. There's a limit to how much I'm willing to put myself through when there's no guarantee of success.

I know what I'm "supposed" to do with regard to treatment. I know what people want me to do. But if you want to know where my heart is, I would rather just trust God for everything, including my life. If God heals me, awesome! It means he has something for me to do. But if God chooses not to heal me, that's awesome too. I win either way.

There's also the issue of coverage, which I talked about in my post, "Profit And Loss." If I lose Medicaid at the end of this month, I won't be able to pay for treatment out of pocket. Traditional treatment will be out of reach. I'll take that as a sign.

I am hopeful about alternative treatments, and I intend to pursue one or more of those. But there's a limit there, too. I'm not going to do wholesale lifestyle change. I eat pretty healthy. My wife and I eat organic as much as we can. We live right behind a Whole Foods, and I'm there all the time. I avoid fast food and processed food. I eat very little red meat, and avoid deep fried foods. My nutritionist thinks I eat very well. So if some naturopath tells me to go on a series of cleanses, or wants me to become vegan, sorry. Not happening. Carbs are non-negotiable for me as well. My attitude is that I'm going to spend whatever time I have left on this planet eating what I like. Life's too short. Especially for me.

But I'm not set in my ways. I have made lifestyle changes. For instance, I've become very disciplined about exercise. I work out every other day, and walk my dog every day. I stand at my desk, rather than sitting. I recently watched an interview with the leading naturopathic expert on prostate cancer in the United States. He said that the number one lifestyle factor in surviving prostate cancer is frequent, vigorous exercise. I was already working out to counteract the effects of Lupron, which makes you lose muscle tone. When I heard that statistic, I committed to working out for the rest of my life. Or I should say, for as long as I can.

I've made changes to my eating patterns to keep my weight up. That's been very successful. I take supplements to fight the cancer and help me deal with side effects from treatment.

My lifestyle has already changed in fundamental ways. There's no avoiding that when you have cancer. But there's a limit to how much I'm willing to do. How much I'm willing to put myself through. I want to enjoy the time I have, however long or short that ends up being. As I've also said before, I'm about quality of life, not quantity.

I realize that if I had children and grandchildren, my attitude would probably be different. But I don't. If my music career was going full steam ahead, and I was in demand as a concert artist, maybe my I'd feel differently. But the opposite is true, and I'm fine with that. I'm actually great with it. I'm happy to be retiring from music. I never thought I'd feel that way, but cancer has completely changed my outlook.

Before I was diagnosed, I was very concerned about getting another gig to replace the worship leading position I had lost when our former church closed. But since I found out that I have cancer, I have no desire to try to get another church gig. Or any gig. I told my wife recently that, since my diagnosis, there hasn't been one time when, while sitting in the congregation at church, I wished I was up front running the show. Not once. I'm happy to just go to church and not be responsible for anything. Again, I'm at peace about it. I feel "released" from that career.

This is one reason why I think I've had so much trouble getting what remains of my music work done. When I think about my music career, I'm very happy to have had it. It's been a great blessing doing what I love for a living. But I have no desire to continue it, even if there was lots of potential work out there for me, which there isn't. I'm not that guy anymore. I'm someone different now. It's like I can feel God saying to me, "Well done. You rest now. I have something else for you to do."

I know that I should think having cancer is terrible. But for me, it's been liberating in many ways. For the first time my life, I have peace. My eyes have been opened to what's really important in life. I feel like I know exactly what I'm supposed to do. I have no idea how our financial needs will be met, but as with my health, my desire is to just trust God. If I'm trusting him, and doing what I feel he's leading me to do, I have no doubt that he'll supply our needs.

Does this make me a cancer peacenik rather than a cancer warrior? Maybe. But I guess I don't see my cancer as a war to be won, or a contest to win. I hate it when I hear someone say that a person "lost" their battle with cancer. No one exits this life as a loser. Not all warriors come home alive from the battlefield. If I don't make it back alive, I didn't lose. Actually, I will have won the greatest prize of all.

If I could give one piece of advice to the loved ones of my fellow cancer warriors, it's that if the one you love who has this disease seems at peace with their circumstances, and doesn't want to fight much, please don't think they're giving up. Acceptance is not surrender. It's realism.

So while I don't feel much like a warrior, I know who has already won the battle with death and the grave. He is not the Prince of War, nor the Prince of Fighting. He's the Prince of Peace. He may have an amazing miracle in store for me that I'm not expecting. He may have a new assignment for me that I know nothing about right now. But that's up to him. As for me, I will keep living on the joy, love, and peace that surrounds me and fills me for as long as God keeps me here.

Whether I survive the war on cancer or not, this war will be won. Maybe I'm just getting an advance preview of the peace. #waroncancer

Monday, May 16, 2016

The Bad With The Good

Since my last post was fairly controversial, I'll start today's post with the least controversial statement ever: Cancer is bad. There's nothing good about it. But there is good that can come from it. I have experienced many good things that are a direct result of my cancer. As with everything in life, we have to take the bad with the good. Or the good with the bad.

I have bad days and good days. This weekend was a good example. Saturday was a wonderful day. I was able to work out in our gym on Saturday morning for the first time in months. We spent the afternoon with close friends. We hadn't seen some of them since Thanksgiving, which made it that much more special. It was a great time. But it came at a price.

Because I had worked out that morning, and the drive to our friends' house is 45 minutes each direction, and I spent much of the day on my feet, I "hit the wall" on Sunday. As soon as my wife and I finished making and eating lunch, (a big batch of chicken vegetable soup intended to supply my wife's lunches for the week) I had to go to bed and sleep for a few hours. I also had to cancel another social gathering I was planning to attend that night which involved a long drive in both directions. I just couldn't make the drive as tired as I was, even after a nap.

Good days and bad days. Many times, after a really good day, when I feel strong and I get a lot done, I pay for it the next day. I think that's mainly because of the Lupron in my system. It affects my endurance. It makes me weaker than I used to be. Not that I was ever that strong.

But I have it a lot easier than many guys I know of that are on Lupron or other hormone treatments. As much as I have complained in this blog about what it does to me, overall, it hasn't been that bad, especially since my second shot on March 1st. The hot flashes are mild, (at least until the weather gets hot - I dread that), I haven't experienced the loss of muscle tone yet that many guys face from Lupron, and the 5-HTP supplement I'm taking has been a godsend when it comes to improving my mood and muting the anger that seems to come from hormone treatment.

So even though there are negative aspects to this treatment, there are also positives. I'm glad that I'm able to tolerate hormone treatment better than many guys are. But I don't like the fact that it makes me unable to do some things I used to do. I'm taking the good with the bad. Or the bad with the good.

I haven't heard anything about whether I'll lose my health coverage yet. I expect to know before the end of the month. But I'm at peace with whatever happens. If my coverage continues, I'll stay with Lupron for as long as it keeps working. If not, I'm done with conventional treatment for the time being, if not for good. I'm OK either way.

Because of the aggressiveness of my cancer, I only expect to get one or two more Lupron shots before my PSA starts rising again, signaling that Lupron is no longer effective. I'm not due for my next shot until September. If I don't have coverage then, I'm happy to move on to something else. In that eventuality, I will simply wait and keep getting bloodwork done until my PSA starts rising. When that happens, I'll look into naturopathic treatment.

My wife and I have already decided not to do any type of chemo. We just don't believe in it. I'm not crazy about the idea of radiation, either. Once I'm done with hormone treatment, those are the only options covered by insurance and Medicaid anyway. So losing coverage will only accelerate the process of moving on to something more naturopathic. I'm fine with that.

My oncologist, radiation oncologist, nutritionist, and therapist are covered by Medicaid. If I have to stop hormone treatment, and intend to refuse chemo and radiation, I won't need my oncologist or radiation oncologist. My nutritionist's program has worked very well for me. I've reached my goal weight and have been able to maintain it for the last two weeks, so I think I'll be alright without a nutritionist for the time being.

And yes, I am going to take some of my homemade chocolate ice cream to my nutritionist. I tried to do so last week, but she's on vacation. I'll do it when she gets back. That will be fun.

It's my therapist that I'll really miss if I lose coverage. We're just getting started. But I am getting my work done, which was the original reason for going. If I have to stop at the end of May, at least I'm confident that I'll be able to finish well. Having to stop therapy is the only bad part of losing coverage right now. But I have to take the bad with the good, if it comes to that.

I doubt that my wife and loved ones will allow me to simply stop treatment at this time. They won't stand for that idea. My benefactors, in particular, will make sure that I accept their offers of help. While it's bad that I need their help, it's very good that help is available to me. I have friends who are going through prostate cancer treatment who have no help. My heart aches for them, and I pray for them every day. It must be hard for them to see the good in all that's bad right now.

And that's the really good thing that's come from this for me. The relationships. The connections. I've made friends in the online support group in which I'm active. Not just Facebook friends, but real ones. People who I love, but have never met. It's a wonderful thing.

The friendships I had before I was diagnosed are, for the most part, better than ever. I now combine friends and family into one category: Loved ones. I have friendships with family members, and friends who I consider family. I love all of them, and I feel very loved. That's a very good thing.

With our financial difficulties, it's easy for me to resent the financial advantages that others have. One of my favorite pastimes has always been going to rock concerts. Now, they're all out of reach, financially. When a concert comes up that all of my friends are going to, I have to pass on it. But I shouldn't complain too much, considering the advantages that I have that others don't.

I have the advantage of being somewhat well known because of my work, and my prominence in a large church in a big city. That made it much easier to raise support in the early days of my illness. It was and remains a great blessing that I don't take for granted, and never will. I'll sacrifice concert tickets for help with cancer treatment. Fair trade.

I have the advantage of a godly, loving family, who love me unconditionally and pray for me constantly. I can't imagine what going through cancer must be like for those who don't have that.

I have the advantage of a newfound purpose. A new passion and calling. Writing this blog. I hope it helps you in some way, but I admit that it helps me more than anyone else. If I was faced with the declining career in music that I have now, and had nothing else to inspire me, this journey would be much more difficult. Many who deal with cancer find a new path that has meaning for them, but many do not. I encourage everyone on this road to find something new to do that inspires you. The bad news is, the you that existed prior to your cancer is probably never coming back. But the good news is that the new you can be better in many ways. I have found this to be true in my life.

You may not have loved ones with the financial means to help you. You may not be well known. You may not have the kind of family that I have. But you can find a new passion. Search your heart. What do you love? What task never gets old, no matter how much you do it? God will help you find that. He helped me find mine. Actually, two of my best friends first mentioned CaringBridge to me; Tiffany Berland (#tiffanysaid) and Nancy Wardell. That's where this blog started. Once I took their advice, God started blessing it. I was off to the races. If you listen to those closest to you, they may be able to point you in the right direction. But you have to listen.

The greatest good to come from this for me is also available to you. It's for everyone. My relationship with God today is unlike it's ever been before. I can't imagine going through this without that. Cancer stripped away every pretense I had. Things I used to think were so important faded to insignificance. All that was left was God, and my loved ones. I learned how to love, and how to be loved. Because God is love, in case you haven't heard. All love originates in him. When we love unconditionally, we are most like God.

So why should I not take the bad with the good? Or as Job 2:10 says, "Shall we accept good from God, and not trouble?" Many learned this lesson long ago. I don't think even Job was the first to learn it. But I didn't learn it until I got hit by God's 2 by 4. At least I know it now, just when I really need it. Because at the end of all of the bad, what waits for me is the ultimate good. Eternal love with an eternal God of love, with all of my loved ones.

So for now, I'll take the bad with the good. And the good with the bad. #waroncancer

Friday, May 13, 2016

Profit And Loss

My last post was titled Love And Loss. This one won't quite as uplifting. Many will find it to be political, but that isn't my intention. I'm only sharing my own experience, but I find now that my experience only confirms my long held beliefs.

I am thrilled that I have readers of this blog around the world. If you live in the U.K., or Portugal, or Germany, or Australia, or any one of a number of other countries where this blog is read, you are likely to shake your heads as I describe what it's like in the U.S. when it comes to health coverage, especially for people like me.

This post won't be funny or spiritual, but it is about my cancer journey. Coverage for treatment is a huge part of that, and today is the day I need to write about it.

You may think that what I'm about to say reveals something about my political beliefs, and you may be right. But I have friends of all political stripes who have found themselves in much the same position as I am in now, and they took advantage of the same type of help that I'm getting. For the moment, anyway.

I've long had beliefs about what kind of health care system I think we should have in the United States, but since I've always been so healthy until recently, I've rarely had much experience with the health care system. For most of my adult life, I didn't have health insurance, being a self employed musician. Or even before that, when I worked for companies that were too small to provide it. But I didn't need it, because I never really needed to go to the doctor.

Providentially, right about the time when health insurance became required by law, my cancer started. Because I live in a state that implemented the Affordable Care Act the way it was intended, with our own state health care exchange, we received a subsidy to help us pay our premiums. In 2014 and 2015, we made too much money to qualify for the Medicaid expansion, which is supposed to cover everyone below a certain income level. But it's only available if you live in a state that accepted that money from the federal government. Because our income was deemed too high, we had to buy the cheapest insurance with the highest deductible. It was all we could afford.

When I was diagnosed with inoperable, aggressive prostate cancer in 2015, my deductible was $6,000. Even with my biopsy, MRI, and bone scan, along with my first Lupron shot and other treatment and appointments, I never hit that number. All of my medical costs for last year came out of pocket. A radiation treatment I was seeking was not covered by my insurance.

Thankfully, we had help. Because of the generosity of loved ones, and a GoFundMe campaign that exceeded its goal, we were able to pay my medical expenses, and pay our bills for about seven months.

But I don't think we should have had to ask for that help. I don't think anyone should have to avoid going to the doctor because they're afraid of what it will cost. That was my life for decades.

This year, because of the fact that I make very little, and my business runs at a substantial loss when you take all of our expenses into account, my wife and I both qualified for the Medicaid expansion. That was huge for us. No deductible, no premiums, and very minimal copays. Like one or two dollars. 100% coverage. It's a great deal.

There are limits. Many practitioners don't accept Medicaid. Some who do only see Medicaid patients on certain days. But I've been very happy with everyone I've seen. My oncologist, radiation oncologist, therapist, and nutritionist are all great. All of my doctors work "for the man," so they don't make more money by recommending any particular treatment. So I feel like their recommendations are coming from the right place. They're recommending treatments based on what they think is best for me, not what's best for their bottom line.

This is how health care should be, in my opinion. Great doctors giving their patients the best care regardless of how well they're reimbursed. And they're not reimbursed well by Medicaid, from what I hear. That makes me admire them all the more.

But Monday, I was notified that my Medicaid coverage will expire at the end of May, because the Department Of Labor thinks I make more money than I do. So my wife had to spend hours after she got home from work generating a profit and loss statement that I could fax over to the local field office to prove that, in fact, I've taken a loss from January to April. Hopefully that will fix the problem, and our coverage will remain intact. I have an appointment with my oncologist on June 7th. If I don't have coverage, I'll have to cancel that appointment.

Here's the problem now. I'm being very transparent here. It's not pretty. If we lose our Medicaid coverage, we will end up with another high deductible, along with monthly premiums that we can't afford. We have already received so much financial help that I don't feel like we can ask for more. I won't be able to continue treatment of any kind.

You do the math. Without treatment, barring a miracle, I won't be here much longer. Simple as that.

It's true that if I asked for more help, there are those who would give it to us. But my point is, I shouldn't have to ask. No one should.

Here's the dirty secret about the for profit health care system in the United States, especially in regard to cancer. There is much more money to made from cancer treatment than from a cure. Pharmaceutical companies spend the vast majority of their cancer research on treatment, rather than finding a cure. There's no money in a cure. On the other hand, there is a huge, profitable industry devoted to cancer treatment. Again, you do the math.

There are natural treatments that hold great promise for a cure, but no research money is devoted to them. For instance, there is significant anecdotal evidence to show that injections of Vitamin C can cure cancer. But no drug company will put money into research on it, because in the U.S., you can't patent a naturally occurring chemical. So they can't make money on it for their stockholders.

I won't even go into the whole private insurance part of this, except to say that insurance will only pay for "standard" medical care. If I decide I want to try those Vitamin C injections to try to cure me, I have to pay for that out of pocket. I don't think that's right, either.

To me, this is an immoral system. Any system that places profits over health is immoral. Any system that has a profit motive to keep us sick and on drugs is an immoral system, in my opinion.

This is not the place to go into detail about how I think the system should be changed. If you'd like to have a private discussion with me about that, I'm loaded for bear. Suffice it to say that I think everyone should be able to expect medical care without cost like we can expect the fire department to come when our house is on fire, or police services when we're the victim of a crime. It seems to me that a not for profit system is the only way to do that.

Don't get me wrong. I am a capitalist. I couldn't have made a living as a self employed entrepreneur since 1988 if I wasn't. I just think that some things should exist as a public service, and medical care should be one of those things. Like public schools and the military. Like roads and sewers. We all pay for those things with our taxes, and they benefit all of us. I think medical care should be treated that way as well.

So my long held belief in the need for a system where everyone is covered, and profit is not an issue has been proved true in my life. With such a system, I wouldn't need to buy insurance, or cover a high deductible. Neither would you. Insurance and premium medical care would still be available for those who can afford it. But for the rest of us, we wouldn't have to decide between getting treatment and paying our mortgage. In the richest, most powerful nation on earth, that should not be an issue.

As long as I have Medicaid, I can afford the treatment I need. If I have to pay an insurance company, plus pay for all of my care because of a high deductible, my choices are either to rely on charity even more than I already am, or pay for my treatment out of pocket and risk losing everything I've worked for, or refusing treatment and just trusting God.

Given those choices, I would probably opt for trusting God for everything, including my life. But my loved ones wouldn't want that. They'd want me to keep relying on charity. Even the ones who are providing it already. But my point remains the same. I shouldn't have to ask for that, and they shouldn't have to provide it.

Am I wrong to feel that, at age 61, with my career pretty much behind me, after a lifetime of contributing to the U.S. economy, and in my current state of health and financial need, that I should simply be taken care of at this point, without having to constantly jump through hoops to demonstrate my poverty? Am I wrong to think that my country should care whether I live or die?

I usually have some kind of scripture reference or spiritual point to make in my posts. But I'm coming up empty on this one, except for this brief point. What were two of Jesus' biggest priorities? Healing the sick, and taking care of the poor. If Christians want America to be a Christian nation, shouldn't our priorities more closely resemble his?

You may strongly disagree with what I've said here, but I'd be willing to bet that, if you do, you probably have good health insurance. You probably make enough money to cover your deductible. But if you've ever been in the position of needing Medicaid, you know exactly where I'm coming from.

Profit and loss. Their profit, my loss. Profit for some should not result in loss for others. Especially when financial profit results in loss of life. That's all I'm saying.

Monday, May 9, 2016

Love And Loss

Since my diagnosis, I've heard many times how vital it is when you have cancer to have a positive attitude. I've been told that I have one, and most of the time, I think I do. But it's easier to be positive on some days than others.

My last post was very positive, because I felt that I had basically won a battle with winter when my lilacs survived so many storms. But today, I don't feel like I've won anything. After one glorious weekend, the lilacs are fading. And so is my positive mood. Actually, it isn't fading. It's pretty much shattered.

In the past month, we've lost two beloved pets at our house. We lost a cat we had had for 14 years a month ago, and I had to put down a dog we've had for 12 years today. Even what's left of my lilacs can't cheer me up.

Love and loss are two sides of the same coin. Anyone or anything you love in this life, you will eventually lose. And those who love you will also lose you. But not forever.

For those who don't have pets, the impact of the loss of a pet is impossible to communicate. It really is losing a member of the family. We raised the dog we lost today since he was eight weeks old. There is a big hole in our hearts and in our house now that he's gone. He was my wife's dog. She also lost her lap cat one month ago. It's been a rough month.

While I can't say that we've lost many close friends in terms of losing relationships, we've certainly lost the ability to see some of them with any regularity. Distance is no obstacle to love, but it's a big obstacle to intimacy. I've only had one close friend die so far, Galen Koch, five years ago. But I didn't lose him. I know exactly where he is.

And I am continually reminded of other losses like that to come, whether from distance or death. Having our closest friends move away in 2001 was hard when we were younger and in our prime. Now, I'm not sure how I'd recover from it.

I now have an unfortunate category in my life that all of us eventually obtain: The people who I only see at memorials. My standard line with many of my friends now is, "I hope the next time I see you, it isn't at a funeral!" I saw some friends I hadn't seen for a while last Monday, at a memorial service.

There's no avoiding it, is there? None of us gets to opt out of loss. Not if we love. If you never want to lose anyone, don't ever love anyone. But that's no way to live. Love is worth the price of loss. Especially when it's only temporary.

I am not one who believes in Dog Heaven, even though I wrote a song by that title once. I could be wrong, but I doubt that pets are included in the resurrection. I think I was with our dog today for the last time. But you and I will never be separated permanently. Love will eventually overcome loss.

Separation from those we love is hard. Even the thought of it can bring tears long before or after the event occurs. With each recent loss for me, whether real or anticipated, while I have been shattered by each, they have forced me to turn it around and see it from the point of view of those who love me. My wife, my family, and my friends. If I am upset by the loss of a dog or cat, or the thought of separation from close friends, how will they feel when they lose me? Not right away, (hopefully) but probably not that far away, either. What right do I have to expect everyone to stay by my side when I may soon be leaving them?

That's why I have to keep a positive attitude. I have to extend grace to those who leave. It would be hypocritical of me to do otherwise. If you love someone, set them free.

We loved our dog, and that's why we chose to be separated from him today. We didn't want him to have to keep on going in his declining state so we could continue to have him around a little while longer. Our love prompted our loss.

When the time comes for someone you love, remember that it won't be permanent. You will see them again. Love will overcome loss. And when the time comes for me, remember that you haven't lost me. You'll know exactly where to find me.

Friday, May 6, 2016

Hope Springs Eternal

In 2005, I planted a lilac bush in our back yard. Each year since, I've waited with great anticipation to see blossoms. It took about four years to see my first one. I'm not much of a gardener, but I've always had a personal connection with this bush. It means a great deal to me to have lilacs at this time of year. My birthday falls during lilac season, and if my lilac bush blooms, I have a much better birthday. For the past three seasons, a late frost has killed my lilacs before they fully bloomed. I'm always really bummed out when that happens.

This year, it was very important to me that my lilacs survive. Because of my emotional state with Lupron in my system, it would have been especially disappointing to me if they had not. I know that it was irrational - par for the course for me these days - but this year, my first spring after my cancer diagnosis, I began to look on my lilac bush as a sign of hope. If the blossoms survived, I would take it as a good omen. If not..., well, better not to go there.

The past month and a half didn't make it easy. If you've read my posts for the past few weeks, you know that my moods have been more bad than good. I've had a constant undercurrent of anger, which I believe is a side effect of the Lupron in my system. 

I've said ever since my first shot that it seems like Lupron imposes menopause on a man. If this is how menopausal, premenstrual, and pregnant women feel, this explains a lot.

While going through all of this, and dealing with some genuine anger issues that hormone treatment has exposed, I clung to the hope that, if my lilac bush could survive all of the spring snowstorms that we had for the past month and a half and still bloom, I could get through my emotional roller coaster and come out on the other side "in full flower" myself.

Again, I know that it was an irrational, emotional thing to cling to, but I couldn't help it. I'm hormonal. Welcome to womanhood, as my friend Deanna would say.

On March 23rd of this year, we got a doozy of a snowstorm. I took the top picture above, and posted it on Facebook with the caption, "Please don't kill my lilacs..., Please don't kill my lilacs..." The buds were barely showing at that point, but I went out in our backyard every hour, knocking snow off of the branches. I was emotionally invested in that bush, and I was gonna do everything I could to save my lilacs.

My friends in the Denver area know what the next six weeks have been like, weather-wise. We had at least three more snowstorms, the final one (we all sincerely hope!) being last weekend. Here is a picture of the same bush one week later, on March 31st.

During each storm, I faithfully went out and knocked snow off of the branches to try to save my lilacs. Each time a storm hit, the blossoms were a little farther along in their development, and therefore more vulnerable to cold.

I will admit now that, more than once, while outside knocking snow off with a broom, with snow dumping on my head, I was in tears, praying that my lilacs would survive. Somehow, I had the idea that if I could save my lilacs, things would go well for me this spring. Emotionally, at least. But the biggest test came during the past week or so.

Last weekend, two things happened, one positive, and one negative. On the positive side, thanks to my dear friend, the aforementioned Deanna Griffiths, I discovered a supplement, 5-HTP, to help regulate my moods and mute the constant undercurrent of anger I was feeling. An online quiz had told me that I was "under a dark cloud," and I certainly was. The constant assaults on my lilac bush, and my seemingly futile efforts to save it, mirrored my futile efforts to control my emotional ups and downs.

On the negative side, we had one more (again, we all sincerely hope with all of our hearts!!!) spring snowstorm. This one lasted all weekend. By this time, my lilacs were almost fully in bloom. The snow was so sticky that I couldn't knock the snow off without losing blossoms, because they were too big by then, and too heavy from moisture. But I had begun taking the supplement, and my mood had lifted. All I could do was hope and pray that my lilacs would be OK.

Monday morning, I saw something very discouraging. Frost on the mailbox and on the grass. I felt sure that, in spite of all of my efforts, I would lose my lilacs. But because of the supplement, and also because of the progress I'm making with my therapist, I thought I'd be OK with losing them. But I was kidding myself. That frost did kill the blossoms on our peach tree. Having a bush full of dead lilac blossoms would have been a crushing blow.

But as you can see, they not only survived, but we have the largest crop of blossoms we've ever had on that bush. Which makes sense, since the bush has continued to grow in spite of not having bloomed in three years. This makes me very happy, as you can imagine. I know it's not logical, but I do take it as a sign of hope.

When you have cancer, you need encouragement from wherever you can get it. When you're on hormone treatment, anything that lifts your spirits is a good thing. Spring, in general, lifts our spirits, especially if you live in an area where it gets cold in the winter. Brown turns to green. Trees start leafing out. Flowers start to bloom. The weather gets warmer. You can enjoy your patio again. All of these things have helped my emotional state recently. But the storms have been a constant reminder of the things that try to pull me down. I tried to fight against it, but I couldn't get the best of the snow or my emotions on my own. I needed help.

My lilac bush needed help, too. Both it and I have had some setbacks. But today, life is good. Hope springs eternal. 

The bush did lose some blossoms. Without all of those storms, our crop would have been larger, but not by that much. But that's not true of me. I'm experiencing a greater harvest in my life. Not in spite of the storm, but because of it.

Of course I don't believe that my lilacs' survival has any connection to mine. But it does have a profound effect on my happiness, which feeds into my general outlook. Any cancer patient can tell you that a positive attitude makes a huge difference. But my lilac bush's happy ending is not my source of hope or encouragement. It does help, though. Seeing that bush more full of lilacs than it's ever been before after so much effort and emotional investment on my part does help me feel like if my lilac bush can survive what it's gone through, I can survive what I'm going through.

Since I went public with my cancer last October, you have been the ones out in the snow, knocking the snow off of my branches to make sure I don't break under the weight of it. Over and over you have done this, and I'll never be able to thank you enough. You've been the source of my encouragement. The lilacs are just the icing on the cake. Birthday cake.

The incredible aroma from my lilac bush fills my nostrils, and I do take it as a sign of hope. But it's not my source of hope. My hope comes from the God that I worship, and who I am getting to know better with each passing day. He gives me hope that I will be able to endure whatever this winter season of life throws my way. And at the end of it all, whatever that means for me, I will come out on the other side in full bloom. And the sweet aroma of his presence will affect all who come near me. Not in spite of the storm, but because of it. Hope springs eternal, for eternity.

Be joyful in hope, patient in affliction, faithful in prayer. (Romans 12:12)

Tuesday, May 3, 2016

Things I Learned In My 60th Year

I only have a few days left at age 60. I turn 61 on Saturday. They say you can't teach an old dog new tricks. I'm definitely an old dog, but I've learned a lot this past year. I don't think I've learned any tricks, though, so maybe the saying is true.

One reason I wanted to reflect on my 60th year today, and no later in the week, is that today is an unfortunate anniversary. One year ago today, the church where I led worship, Hope Fellowship, held our last service. The loss of that church was far more than the loss of a gig to us. We lost the support of a church home during one of the most difficult times of our lives. It took months to replace that, and I still miss seeing those people every week, though we still maintain friendships with many of them to this day.

One of those friends, Mark Allen, gave me the coffee mug that's pictured above for my 60th birthday. On the other side, it says, "I'm not old, I'm epic." That appeals to a prog rock fan like me. Epic like a 25 minute Yes song. That's me. I wish. I have to use this mug for the rest of the week. On Saturday, I won't be 60 anymore.

At my 60th birthday party, I learned that it's not necessarily a bad thing to have a blizzard the same night. We had a great turnout in spite of the snow on May 9th, but the weather kept everyone inside, and it turned out to be the best party we've ever had.

But that's not why we're here. This won't be a retrospective post, but a reflective one. I learned some bad things, and also some very good things at 60. Life changing things.

Of course, I learned this past August that I have cancer, after learning in April that my PSA was 15.8, up from 6.6 two years earlier. Any number above 4.0 is bad. Since I have prostate cancer in my family, I knew what the likelihood was, but I didn't know for sure that I had cancer until August. Soon after, I learned that it was aggressive and inoperable. I learned that I will probably have a much shorter life span than I was expecting.

I learned much more than I wanted to learn about how a hormone treatment like Lupron would affect me. When you are diagnosed with cancer, you get a crash course on a lot of things, and there's no instruction manual on how to handle it. You have to learn as you go, and it's a bumpy ride.

I had to learn how to gain weight. Because I've been naturally thin my whole life, it's always been easy for me to lose weight, and very hard to gain it. Cancer makes it that much harder. I had to go to a nutritionist to learn how to put on pounds. It's working. I weighed 130 today, which is my normal weight. Now I have to learn how to maintain at this weight. I don't want to keep gaining.

I learned that people can say some pretty dumb things when they find out that you have prostate cancer. Well meaning things, but dumb nonetheless.

But I've learned some much more important things at age 60 than anything health related. Things that are just as life changing as cancer and the treatment that goes along with it. Wonderful things, mostly.

When I went public with my diagnosis, I learned within hours that I was much more loved than I realized. In the first few weeks after I announced my cancer on Facebook, and we opened our GoFundMe campaign, the outpouring of love and support was nothing short of astonishing. I told close friends and family members that my wife and I had no clue how loved we are.

If you've read my early posts, or were one of my original CaringBridge community, you've seen how I struggled for months to wrap my head around all of this love. I still struggle to come to terms with it, and I don't think I'll ever feel that I deserve it, but I accept it now. It forms a foundation under me, a "bed of love." Friends make fun of me for using that expression, but that's how it feels to me. I feel like that bed, or cushion, or foundation will catch me if I fall. It's hard to explain.

This is why I encourage my cancer brothers to go public as well, but many don't feel like they can. My heart breaks for them.

But I've also learned that, when you first go public, while the initial response is great, even overwhelming, after a few months, it slows to a trickle. People move on with their lives, of course. You have to expect that. In the early stages, a lot of people say to let them know if you need anything. But later, if you seem like you're getting along OK, people forget that you may still need some help. And if you're at a late enough stage of cancer, you probably always will. But people don't ask how they can help, probably because they know you might tell them.

In our case, this is probably directly related to not having had a church home during this time. Had we been part of a congregation who knew us and our needs, things might have been different. That's a reason to go to church! A church family will rally around you in your time of need. So I've learned not to get cancer when we're between churches! Oops.

I've learned that I have a legacy that I want to protect. A worldwide ministry that I've been a big part of for many years. So while it's difficult at times for me to focus on my old work because I'm so preoccupied with this thing that's taken over my life, at the same time, I want to make sure that I finish well in that ministry and hand it off to the next person or people, who will take it places that I never could.

I've learned that what's really important are the people in my life. Long dormant relationships have come alive. Old friendships are deeper now. New friendships keep developing. It's a wonderful thing. My favorite thing to do now is be with my friends in person, or communicate with them on the phone, via email or text, or online. Love is addictive. Giving it and receiving it. When we love, we are most like God.

Which leads me to the most important thing I learned at age 60.  I learned that God is real. I always believed that he was, and have experienced him throughout my life. But not like this. Now he's so close I can hear him whisper. I can feel him all round me and inside me. The love of friends and family, as wonderful as it is, can't compare with the love of God. Like him, it's infinite.

I've learned what joy is. I'm experiencing it on a continual basis for the first time in my life. I learned about joy when I finally understood that I had to rely on God. I can't take care of everything myself anymore, as if I ever could. I wish it hadn't taken until age 60 to learn that, but at least I finally did.

I've learned what songs are for. Not for me to analyze or criticize, but to add meaning to people's lives.

And I've learned that God has something for me to do. Something important. And it's something I love, which makes it all the better. I'm supposed to write about what I'm going through, and try to use my experience to help others who are going through similar things. Whether I live or die, that will live on. This blog will always be here, long after I'm gone. I may start turning it into a book soon. If I do, that will be out there too, hopefully helping many people.

I'm glad that I've never stopped learning. In my adult life, I've learned about music and technology, recording and pop vocal technique. I've learned a lot about the Bible from years of intensive study. I've learned how to be a church worship leader. But none of that compares to what cancer has taught me, and what God continues to teach me through it. That's the purpose of this blog; it's about my cancer and about what God is teaching me through it. It's the most important lesson of my life, and I don't think I'm anywhere near done learning.

Guide me in your truth and teach me,
    for you are God my Savior,
and my hope is in you all day long. (Psalm 25:5)