It's time to come clean about some things. This will be a tough post. Also very long, but you're used to that. Not many jokes. Oh, who am I kidding? There are always jokes. There will be jokes at my memorial! There'd better be. My service will be funny. Count on it.
But don't worry, that's not what I want to talk about. I need to be careful, along with being vulnerable here. I need to explain some things that I haven't been able to explain to anyone beyond our inner circle until now. But the time has come to let you all in on the whole picture, as much as I can.
If you've been following my story since I first launched my CaringBridge site, I especially need to apologize to you. I've strung you along for far too long, not being able to give you the whole story. I want you to know how much that's been killing me. But now I can tell you what's really been going on.
This will not make me look good. You might be angry with me after you read some of this. You might be hurt that I kept some of this from you. You might be distressed by my conclusions. All I can say is, I'm sorry. I had to keep certain information close until now. I hope you understand.
I need to start at the beginning. When I was first diagnosed, as a matter of protocol, they scheduled me for an MRI and bone scan to see if my cancer had metastisized. My biopsy had indicated a very aggressive cancer. They found a suspicious spot on my left upper arm bone. That, in combination with my biopsy numbers, was enough for them to classify me as metastatic, with metastasis to bone. If proven, I would be Stage 4.
This meant that I was inoperable, and possibly incurable. My oncologist at the time said that I should apply for Social Security Disability, as metastatic cancer was an automatic qualifier. I applied right away, on September 1st, 2015.
We proceeded on the basis of that diagnosis, that I had prostate cancer in my bones. I went public with that information, and the response was incredible. The support we received blew our minds. The financial support we received has sustained us until now, seven months later.
In January, I got a new oncologist. After consulting with a board of experts, he recommended an MRI of the specific area of my shoulder where the spot had been found. That MRI revealed this image.
Impressive, isn't it? It looks like a metastasis should look. But my oncologist wasn't convinced, and neither was my radiation oncologist. He took my case back to the same board of experts, and together, in consultation, they decided that this spot is not, in fact, cancer. Apparently the surrounding tissue doesn't look like it should look if it's next to a malignant tumor. Now they think it's some kind of benign tendonitis thing.
Of course, they could be wrong. But it's not practical to do a biopsy of it, so just as they proceeded under the assumption that it was cancer before, without really proving it one way or the other, now they're doing the same thing in reverse. Proceeding under the assumption that it's not cancer, without really proving or disproving their assumption.
They downgraded me from metastatic to merely inoperable, which is bad enough. It's possible, even likely, that I have microscopic metastasis, but they haven't been able to detect it in a scan yet.
The fact that this spot isn't cancer is great news, right? Not for me. All my loved ones were happy, but I saw my retirement slipping away.
My problem was, I was still in the process of trying for disability. I had been very open about all of this in my CaringBridge journal, to the point of writing an entire post about the above image. When they told me I was non-metastatic, my first instinct was to try to protect that claim. I was depending on it for my retirement, which I wanted desperately. I still do. That's what I want, more than anything. To retire, to be able to stop working, and focus on my illness.
I won't take the time here to describe my declining career. If you want to read that sad story, read my post, "The Rest Of The Story." Suffice it to say that, even if I was not going through cancer treatment, I would not be able to make a living. Cancer makes it that much harder.
For many years, I have wanted more than anything else to be "done." Not done with life, but DUNWORKIN. I'm tired. Burned out on trying to make a living as a musician in this culture. As great a time as I've had, and I wouldn't trade it even now, doing music for a living does not prepare you well for retirement. Most musicians don't make enough to put much money away. I was no exception, but when I was making good money, and I had quite a few years of that, we didn't put the money we made away. We enjoyed ourselves. So we don't have a nice retirement account that we can draw from. Neither of us had jobs that provided that.
This, of course, made disability seem like the perfect solution at the perfect time. So I will admit now that, when my doctors said I was non-metastatic, my first instinct was to scrub my journal of every reference to disability and metastasis. It seemed all too likely to me that someone at Social Security was monitoring all of this online transparency. So I stopped talking about it. You may have noticed. I shared this information with my inner circle only. I felt like I had to do that to protect my retirement.
But then, about a month ago, I got some more forms to fill out from Social Security. It seemed that metastasis was not what they were basing the ruling on after all. The new forms were all about my ability to work, which is not good at all since I started treatment. I'm unable to get through a long band rehearsal now. Don't call me for a 3 hour gig. I couldn't get through it. Vocally, yes. Physically, no. I'm a singer, in case you're new here.
This encouraged me. I filled out the forms with great gusto, and gave my caseworker all kinds of reasons why I can't work anywhere near like I used to. But I was still doing some work, and I was honest about that on the forms. I really thought my caseworker wanted me to give him enough reason for a positive ruling, and I did so, in spades. We were confident that we'd be approved, and soon.
And the sooner the better. Seven months of paying bills had depleted all of the funds that had been contributed. We were on the verge of not being able to pay our bills for the first time. But I was still confident. I told a friend just a few days ago that God's timing is always perfect. He's rarely early, but he's never late. He's always right on time. As I've said before in this journal, when you're tempted to think God is late, remember that he invented time.
So I had no doubt that our approval letter, along with a check for all of my back pay since September 1st, would arrive in the mail this week. That letter arrived Friday, but with no check. I've been denied.
This was the devastating blow that I referred to yesterday. I won't go into the miraculous reprieve that we also received, but that back paycheck wasn't part of it.
My options are not good. I can appeal, but an appeals process would take a year to 14 months, during which time I could not work at all. You have to demonstrate that you can't work by not working. Don't ask if I can work under the table. I'd have to go under oath about it at some point in the appeals process, I'm sure. And I'm blogging about Jesus, for crying out loud! I have to tell the truth.
I would be fine with going for an appeal, and stopping all work, if we could exist without me making any income for over a year. We can't. My wife doesn't make enough to support the two of us.
In addition, I have a responsibility to two small, family-owned, Christian companies for whom I produce their flagship products. If I stop working for over a year, these companies could be in big trouble. I can't let that happen.
But it's not just that. These CD series that I produce are my legacy. I'm about to produce volume 8 of one series, and volumes 19 and 20 of the other. They're what I'm known for, and what I'll be remembered for by many people. It's a great privilege to have a legacy like that, that I feel I must protect. I also realize that I wouldn't have the base of support that I have without that. So I can't just quit, as much as I wish I could.
And I really wish I could. More than anything. Just saying. Again.
This means that I have to abandon my disability claim. I have to keep working. No choice.
As a result, for the first time since this whole thing started, I am depressed. I'm mourning my lost retirement. For the past three days, I've felt like, unless something else opens up for me, I'm stuck working in a declining career until I drop dead. I know that sounds harsh, but that's how I've been feeling. I thought I had a glide path to retirement. Now I'll never be able to retire, unless some large windfall drops into our laps. That doesn't seem likely.
I'm unaccustomed to feeling depressed. I've always been a basically carefree, happy-go-lucky kind of guy. Even cancer didn't shake my mood. But this has thrown me for a loop.
Here's another bad part. I've now reached a terrible stage of life that many men reach; that day when you realize that you can provide for your wife better dead than alive. Nobody wants to hear that, but it's the truth. If I died in the next few years, my wife would be set. She'd never have to work again. She'd have the house, and the insurance money. Don't think we men don't think about that, ladies. We can't help but think about that when we're in a situation like this.
Please don't say retirement is overrated, or that I just have to suck it up and work like the rest of you. A comment like that is a good way to get unfriended or blocked the way I feel right now. No matter who you are.
If you think this increases my desire to fight to live, you're wrong. It does the opposite. But don't worry. I'm not suicidal. Just in mourning. It may be a while before I snap out of it.
So this is where the rubber meets the road, when it comes to trusting God. I have no trouble believing that God can heal my cancer if he chooses to do so. But I have a lot of trouble believing that God will provide me a fun, fulfilling retirement. Maybe a second part-time career as an author and public speaker. I could get excited about that. But I thought disability would give me the time and chance to finish my work for the companies I mentioned, and then retire to focus on my illness. Now it looks like I have to keep going until I can't go anymore. This is not a prospect I look forward to.
I have a few good friends that are dealing with cancer, but none of them have to try to work and make money during treatment. I don't know how I'm going to do it. Lord, help me.
I have made it my business to use this blog to encourage others, but right now, I need encouragement. I need to know that I won't always feel this way.
Again, if you feel like I've allowed you to believe I have cancer in my bones when I don't, I don't know what to say. I have no defense. I hope you can forgive me.
So now you know. Full disclosure. I'd better get to work fast, but I'm not sure I have the heart for it. I may have trouble finding my song again.
That's the end of the bad stuff. From here on, it gets better. Mostly.
So as I said in my last post, I know I'm not alone. A friend told me yesterday that, a year from now, I will look back and be blown away by what God has done. I believe her, but it's hard to feel it right now. I do know that I was blown away by what he's done until I got that letter on Friday. And I know that he provided a major part of a temporary solution for us yesterday as well, in the form of some amazing friends. I know I should hang on to that as a sign of hope for the future.
If God wants me to fight to live, he needs to give me some assurance that he has something for me to do that will drive me to want to keep going. The work I have to do right now won't do that. I see no career path for me doing what I've been doing, and I don't want a career path anyway. Been there, done that. Got the T-shirt free 'cause I made the CD. See, I write lyrics without even trying. But I didn't enjoy it.
I could throw Jeremiah 29:11 out there so easily, right now, but today, it just sounds like a platitude. Another close friend recently told me to remember all of the years that God provided for us. I told her I do remember those years, but I also remember all the years when he didn't. The years when we had to borrow money to pay our bills. The several years when I made so little that I paid no Social Security taxes at all. We are not promised comfort. We're not promised a nice retirement. But he does promise that he'll be with us. He'll never leave us or forsake us. (Hebrews 13:5)
Thanks to Nicki Morgan for this beautiful image, which she created herself. She posted it to her Instagram account this morning, after I had written this post, but well before I published it. I'm telling ya, she and I connecting again at this time is a total God thing.
If you click on the above link for the verse from Hebrews, you'll see that the part that Nicki and I both quoted, the part that is so familiar to so many, is only the last part of that verse. Here's what the whole verse says: Keep your lives free from the love of money and be content with what you have, because God has said, “Never will I leave you; never will I forsake you.” Are you getting it yet, Mark?
I know God doesn't owe me anything. Even now, I'm much better off than many people. I wouldn't trade places with most of the guys I've talked to in the support group I mentioned yesterday. Even in this depressed state, I am blessed compared to many men with the same cancer that I have.
So this is the other scripture verse I will share. Not platitudes about a hope and a future, but this one, from Romans 8:28. And we know that in all things God works for the good of those who love him, who have been called according to his purpose. Not all things work together, as many of us learned it in the King James version, but in all things God works for our good. Even cancer.
Every kid in Sunday school knows that verse, but many don't know the next verse. What the next verse basically says is that God does this in order to conform us to the likeness of his son. That's what I've felt God's been doing with me all along, since this started. He's making me more like him. And I don't want him to stop.
So if I have to suffer to be like Jesus, well, Jesus suffered, didn't he? I just wrote a whole week of blog posts about it. Can I forget those posts now? Not if I'm serious.
One of the things I have to do is remind myself of my own words. Of what I know I believe. From my post, Fear Not: Do we believe that God really loves us, and wants what's best for us? I do. Not only do I believe that, I believe that God wants what's best for us more than we want what's best for ourselves. Sometimes we don't want what's best for us. Sometimes we just want what we want. But I believe that God's love for us is purer and more intense than our love for ourselves or anyone else, and he not only knows what's best more than we do, he wants what's best for us more than we do. If I really believe that, how can I be afraid? Listen to yourself, Mark.
A new friend who I believe God placed in my life at this time to help me (as I was placed in hers to help her) just stopped by to give me a very thoughtful gift. I am very touched by it, but I was blown away by her offer to help me in a very tangible way just now. A way that could very well help me do the work I need to do. Just when I needed it. God is still good after all.
And here's the thing. I really do believe that God is in this blog. I believe that this is what he wants me to do next. Write about my cancer process, and use it to help others. I just need for God to provide a way that I can do that for a living. Or provide for our financial needs some other way, so I can do this just for the love of it. Either way. Is it wrong for me to expect this from God, after what I believed he would do for all of this time?
Now that I know he won't provide via Social Security right now, he must have something better for me. I just needed to be reminded of what I know is true. The government sucks, but God is still good. I'd tend to forget that the way I feel right now, but he just keeps reminding me.
NOTE: Many more people have read this post than the next one. All my questions here are answered in my next post, All Things New. Please keep reading.