Thursday, September 15, 2016

Life Expectancy


I went to see my oncologist this morning, with my wife by my side. I like having her there. Her presence is reassuring. It's also good for her to hear the news directly from the doctor, rather than from me. Not to mention having someone available to drive home when my world has been rocked.

And it was rocked today, even though he told me exactly what I expected to hear. But hearing it come out of the doctor's mouth somehow makes it much more real. But I'm getting ahead of myself, which I often do.

My oncologist was expecting a call from a colleague at the local university hospital about potential clinical trials that I might be a good candidate for. But he hadn't heard back from that doctor yet. I expect to hear from my oncologist or his colleague by Wednesday of next week. If I end up in a clinical trial, I'll tell you all about it when the time comes, as I always do.

My doctor will also ask his colleague about Provenge for me, which my oncologist refers to as a "vaccine." The way it's been described to me, it's not a vaccine by the definition I know. It's not a one-time shot that's only effective if you don't have the disease yet. But it's a treatment that is well tolerated, with few side effects, if any. And I've heard from friends how it's extended the lives of people they know. So I'm interested in that. But if I end up in a trial, that may be delayed until the trial is over.

My oncologist wants to start me on Xtandi, which is a capsule I'd take every day to make Lupron more effective. It's a hormone treatment, not chemo. My oncologist assures me that I should have no side effects from Xtandi. But that will also be delayed until we know if I'm being put into a clinical trial.

He also wants to put me on a bone-strengthening drug called Xgeva. Why do all of these drugs start with X? Xgeva is a shot that I'd get once a month. It's usually very well tolerated, but it can have a serious side effect for people with dental problems. It can cause bone death in the jawbone. Lovely. So I have to go to the dentist to make sure I don't need to have a tooth pulled, or a root canal. If I'm in good dental health, which I think I am, I'm a candidate for Xgeva.

Why do I need a bone-strengthening drug? Because of the cancer in the bones of my spine. The drug is supposed to stave off bone fractures and bone pain, both of which go with bone metastasis.

For years, my wife and I have both been very anti-pharmaceutical people. I really hate the idea of being on this many pharmaceutical drugs for the rest of my life. And I'm sure that won't be the end of the list, by any means. But without them, my remaining time could be very short indeed.

The aggressiveness of my cancer is the problem, as I keep saying. Because my cancer is so aggressive, treatments are not likely to give me as much time as they would for someone with a less aggressive cancer.

When the doctor had finished giving me my options, I had a few questions for him. The main question was one I had not asked until now. I wanted a prognosis. He gave me the exact answer I had been expecting. But though I expected the answer he gave, it still made my head spin when I heard him say it. You won't like it.

He said that if I respond well to treatment, I should get another three to five years. If not, one to two years. That's a sobering thing to hear from a doctor.

Before you start telling me that a doctor told you or a loved one you had six months to live ten years ago, and you're still here, ask if your disease or theirs was as aggressive as mine. Ask if I'm going to submit to every treatment that you or they went through. The answer to both of those questions is probably no.

I'm not glad that the time I'm being given is so short, of course. But I am glad to have a number. It gives me a sense of urgency to get things done while I still can. It puts my priorities in order. I know now more than ever what I'm supposed to do for the next year or so. I want to finish well. And I've always worked best under a deadline. That's a word with added meaning now. Deadline.

If you want to know the truth, I can handle the prospect of a short life expectancy better than the thought of having to go to the dentist! I don't even have a dentist. I haven't been to one since 2009. So that's the first thing on my agenda. Find a dentist I'm comfortable with who takes my insurance. I don't have any dental pain or anything, so I think I'll be told I'm OK to take Xgeva to strengthen my bones.

To repeat what I said in my post No Time To Waste, I'm not giving up, and I won't. If I was, I wouldn't be seeing a dentist or trying to get into a clinical trial. I wouldn't have gotten a Lupron shot on Tuesday if I was giving up. I still believe that natural remedies can extend my life, if not cure me. I believe that God can heal me at any time if he chooses to do so. But he hasn't so far.

If you want to know how I'd like you to pray for me, please pray that I'll continue to have no pain. The longer I don't have bone pain, the more important things I can get done. The more time I have before I start to deteriorate, the better.

I know that many of you will continue to pray for my healing. Please keep right on praying and believing for that. But I'm more concerned for the quality of life that I'll have before the inevitable happens. When I reach the point where I can't leave the house, or get out of bed, that won't be living. Not for me. That's why I have to do what I can, while I can. No matter what it costs me, physically or emotionally.

As long as God lets me, I'm going to do the things that are important to me. There are tasks that I want and need to accomplish, but even more important, there are people I need to spend time with. There's a story I have to finish telling. I'll keep telling it for as long as I can.

There are things I've been waiting to say for months, since this whole thing started. Now that I'm on the home stretch, I'll finally say them when the time is right. But not now. I've already given you enough to cry about.

It's been a while since I concluded with a passage of scripture, but today, I'm reminded of a familiar passage from the 23rd Psalm. I'll close with it today. It gives me hope.

Even though I walk through the valley of the shadow of death
I will fear no evil, for you are with me
Your rod and your staff, they comfort me
You prepare a table for me in the presence of my enemies
You anoint my head with oil
My cup runs over
Surely goodness and mercy will follow me all the days of my life
And I will dwell in the house of the Lord forever


#waroncancer

5 comments:

  1. Your journey is a tough one. But, your words are affirming and encouraging and honest...just what I would expect from you. I regret not being close enough to buy you a cup of coffee and simply be present for you. Blessings, friend!

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  2. What a blessing to know you and be a part of the prayers going straight up to Heaven! God will not take you until you fulfill His Will. We will continue to pray.

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  3. God bless and give you comfort and peace. The journey is hard but the reward at the end when you see the face of God will be more then worth it. Keep us posted on your journey as I have cancer too just not agressive

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  4. Love you, my friend. My prayer for you is that He anoint your time on this earth to be used for His glory, however long that may be, and that you experience joy as you've never experienced! I know there is no 'fear' in dying for you, Mark, but rather a fear in living without 'living'. I get that. So live, my friend. And love every minute of it. I so wish we could sit across from each other and share a cup of coffee this morning and talk about 'life'. Since we can't, I'm going to sit at my Lord's feet with a cup of coffee and talk to Him about my friend. Your ears burning??? :-)

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    1. I love your comments, Kim. You inspire me.

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