Lee Stephen

The website of author Lee Stephen

methotrexate

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Cancer Update

I had intended to use this entry as the first installment of my The Next Big Thing casting series, but being that my first big follow-up with the doctor was today concerning my mycosis fungoides diagnosis, I thought this entry would be better served letting people know how I was doing.

There’s good news, and there’s news that’s still not necessarily bad, but nonetheless not fun. First, the good news! The treatments I’ve been taking have been working very, very well, and there’s no reason to believe that this cancer won’t be defeated entirely. As I’d mentioned in the first entry, mycosis fungoides is incurable unless caught very early. We believe that may have been the case with me. All signs are pointing to this thing being defeated entirely.

The not fun news is that I’ll still have to be on chemotherapy for at least 2-3 months. By far, chemo is the worst part of this process. Though it’s just a once-a-week pill (methotrexate, for those curious), it still has a flurry of cruddy side effects, including nausea, headaches, and dizziness. It’s definitely not a picker-upper, and I’ve already had to leave work once (and miss a day) because of it. But, if the pills are necessary, they’re just necessary. It’s a take-no-chances kind of thing. I will happily endure the side effects of chemo pills if it means wiping out this cancer for good. So like I said, it’s not fun news, but it’s not necessarily bad. It’s just part of the process.

There’s something else I want to touch on here, and it’s something that comes just as much from my wife as it does me. We have both been completely humbled, and completely floored by the amount of support we’ve received. I’m serious. It’s overwhelming. Since this diagnosis, we’ve had our grass cut, meals delivered, donations given, none of which we asked for. That doesn’t even take into account the incredible amount of prayers and well-wishes that have been sent our way. This has been completely amazing. From the outset, we’ve wanted to use this cancer in a positive way for others – I can honestly say, this has been a hugely positive development for us. The support we’ve seen given to us (for which we both feel undeserving) has been life-affecting. It makes us want to be better people. From the bottom of both our hearts, thank you.

I’m going to be fine. The big toll of this (chemo aside) has been purely emotional and psychological. I don’t “feel” this cancer. It doesn’t slow me down. It just lingers in my thoughts. It’s very sobering to come to grips with your own mortality at age thirty-one. Even though this isn’t a cancer that’s going to kill me, the question has often arisen in my brain, why was it it mycosis fungoides? What made it that and not pancreatic cancer, or advanced prostate, or something in my brain? Did I just draw a lucky straw? It makes you realize that as healthy as you think you are, life can pick you in a heartbeat. It can give you something you’ve never imagined and force you to deal with it. I’ve had the thought more than just a few times, “It’s great that I’ll beat this, but what might come next?” Those thoughts are poison, but hey, I’m human. The key is faith. I’m working on it. I’m getting there. The encouragement, prayers, and support I’ve received have gone a tremendous way in reminding us that enough though times are tough, we are never forsaken. We’re never not beloved by God. And that has been a gift far more valuable to us than any cancer could be detrimental.

So again, thank you all, so very, very, very much. This has been incredible. I look forward to enduring these next couple months and having this chapter of life behind me. Not forgotten. But behind me.

Stay tuned for tomorrow, when the first of the The Next Big Thing casting entries gets posted! I’m excited about sharing these and about putting my mental focus somewhere else. It’s going to be fun.

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The C-Word

I thought long and hard about whether to post an entry about this. Truth be told, there’s a part of me that still doesn’t want to. The problem with that is that I have no good reason for keeping it to myself, especially when there are people out there whom I know would want to know. This isn’t because I did anything wrong. Much as Type-1 diabetes picked my wife at age sixteen, this decided to pick me at thirty-one. So here goes.

This  past Tuesday, I got a phone call from my doctor informing me that I had cancer.

Before this goes any further, I feel like I have to say something. Whenever people see or hear that word, they immediately think the worst. Allow me to assure you: I am not going to die. The particular cancer I have is called mycosis fungoides, and it’s a type of cutaneous T-cell lymphoma. It is extremely rare, only affecting five in every million people (for those who keep up with me on Facebook, my “I’m five in a million!” post will now make sense – that was typed literally as I was leaving the doctor’s office). Despite its name, mycosis fungoides is not fungal. It does, however, have some of the physical characteristics of a fungal infection, hence the name. I did put a link to its wikipedia page up there, but take my advice and resist the urge to look it up too in-depthly, because all it’s going to do is make you think, “Bull crap, Lee, you are going to die!” I’m not. The pictures of mycosis fungoides you’ll find on the internet are nothing – let me repeat, nothing – like what I have. I have several small patches that don’t look anything like the massive sores and lesions you’ll find if you look on Google images. I was fortunate enough to catch this very early, still in its infant stage. Typically, mycosis fungoides is incurable (but manageable), however we may have even discovered it early enough to wipe out entirely. That’s the prayer.

I took my first dose of pill-based chemotherapy on Wednesday, addition to being prescribed two potent steroid creams specifically geared toward this type of condition, which is strictly surface-based (in other words, this isn’t in my organs). In two weeks I have a follow-up, at which point I’ll know a lot more about how well the treatments are working. I believe they’ll work well, as I’ve already seen signs of significant improvement in less than a week of utilizing these creams. And obviously, the chemo will do its thing, too. For those wondering, no, I won’t be losing any hair. The only side effect I’ve felt to this point has been a headache that came the day after the pills, which are once-a-week pills.

There’s a chance, being what it is, that I may have to deal with this for the rest of my life. Though it can go into remission for 10+ years, unless it can be wiped out completely at the outset, it’s always there. Lurking. Waiting. Like a necrilid in the dark.

I put that last little bit in there for a reason. I’m still me. Is this depressing? Yeah. Is it stressful? Heck yeah. I feel about like you would if your doctor told you that you had cancer. But all things happen for a reason, and all things work for the glory of God. I have no clue what will happen, here. As confident as everyone is that this will be wiped out, there’s always a chance it won’t be. That’s life. But I was never in control of life, anyway. As a writer, I can put Scott Remington, and Svetlana, and Jayden, and Esther through terrible things. I can pretty much wreck their lives. But I can do this because I, unlike them, know what the next pages hold. I know chapters that are books away that they can’t even begin to see in the midst of their crisis. And I know, because I love them, that they’re going to be okay. That trials will make them better. That though none of them are guaranteed smooth sailing or even survival, I will never forsake them, because they are mine. If I, the wretched sinner than I am, can feel this way about characters I made up, how much vastly greater is God’s love for me, one of his children? It can’t even be compared.

In the meantime, please just say a prayer for me. That’s the best way anyone can help. Forgive me if I’m occasionally a little “blah,” and if you happen to be an Epic fan, good gravy, please talk to me about Epic. Escaping to the world of Novosibirsk, and Room-14, and Bakmas, and E-35s is like, the greatest therapy in the world right now. It’s like medicine.

And that’s it. I don’t plan on harping on this topic, but I will keep people posted as things develop. Hopefully I won’t need to for much longer!

 

(because I’m cured, not dead)