Saturday, July 9, 2016


This Tuesday, July 12th, I have the appointment with my oncologist that was delayed from last month due to losing my insurance coverage. I got my blood drawn yesterday in advance of Tuesday's appointment. I have some questions to ask of my oncologist when I see him. Assuming that all is well with my numbers, that is. If not, that will change the conversation.

My next Lupron shot is not scheduled until September 1st. So we don't expect my PSA or other cancer related numbers to rise. But you never know with prostate cancer. I'm willing to admit that I'm a little nervous. When you have prostate cancer, you get tested at regular intervals for the rest of your life, even if you no longer have your prostate. And every time, you get nervous. Even if you've been declared "cancer free," it can always come back.

The Lupron that's still in my system should prevent my PSA from rising, but my cancer is very aggressive. If there were no reason to be watchful, I wouldn't be getting tested again until just before my next shot in September. So I'm a little nervous. Not much, just a little.

My last PSA result was 1.42. That's down from 4.00 previously, and 15.8 when I was diagnosed. Anything above 4.00 is considered abnormal. My number will never be zero due to the fact that I still have my prostate, and I'm inoperable. But as long as it doesn't rise, it means that the cancer isn't growing. When my PSA starts rising again, it means Lupron is no longer working, and we have to find another strategy.

The purpose of this consultation with my oncologist is to decide on a strategy. The last time I saw him, he wisely thought it would be good to wait a few months, think about it, get as much information as I can, and decide what I'd like to do. I'm glad that we took this time, because I was not ready to decide on these things in March. I have a firm idea now of what I'd like to do, but I want to talk to him about it first.

At my last appointment in March, when I got my last shot, my oncologist referred me to a radiation oncologist to check into possible radiation treatment. But from what I've heard from those who have had radiation treatment, I'm reluctant to do that. The doctor I saw wants me to have the new so-called "prostate only" radiation procedure. They say that they can confine the radiation treatment to just that area, without radiating everything down there. He claims that the long term side effects that are associated with the old "whole pelvis" procedure are almost nonexistent with this newer procedure. He holds it out as a cure that would give me a normal life span.

The problem for me is, it sounds too good to be true. I've looked into it, and can't find any long term statistics about side effects from that procedure. I've asked about it in the online support groups that I frequent, but no one in those groups has had it done longer ago than the last year or two. Nobody can tell me what my quality of life is likely to be 10 to 20 years from now if I have it done. I'm not interested in being anyone's guinea pig. The problem with radiation, for me, is that it's so permanent.

Which leads me to my first question for my oncologist. If this procedure is so effective, and so non-invasive, and so free of long term side effects, if it's really a cure, why isn't it the standard procedure for everyone? Why is anyone getting surgery if they have this option?

If his answer satisfies me, my thought is that I'd like to hold that option in reserve. Maybe we can come up with test result numbers that show a point of no return. If I hit a certain number, then we have to opt for this procedure. I'd like to know what he'd think of a strategy like that. Maybe by the time I'd hit the magic number, there will be statistics that satisfy me.

But I have reason to believe that I may no longer have cancer. For one thing, I no longer struggle to keep my weight up. I'm staying at my normal weight without adding calories to my diet. I'm back to eating like I always have, and I'm not losing weight. I'll ask him about that.

And as I've talked about before, I have had many people praying for my healing for months. While I am not expecting God to heal me, I believe that he can if he so chooses. I'm fine with whatever God wants to do, but I want to find out if I'm healed. If I am, I don't want another Lupron shot. Which leads me to my main question for my oncologist.

Here's what I'd like to do. Assuming my PSA has not risen, I'd like his clearance to delay my next shot and go on what's called Active Surveillance. That means getting tested at regular intervals that the doctor would prescribe. If my PSA and other numbers don't rise over a period of time that he would agree to, then I'd get another biopsy to prove whether or not I still have cancer.

I don't want to just keep getting shots, assuming that the cancer is still there, and being satisfied that my numbers stay low. They might be staying low because I'm cured. This may sound like false hope to you, and maybe it is. But I want to know for sure. I just want my oncologist to sign off on that strategy. If he tells me it's too big a risk, I'll factor that into my decision. I have until September to decide.

Of course, if my PSA is higher than 1.42 when my results come in, all of those questions are moot. There will be a whole series of new questions that I can't even think of right now. But I'll cross that bridge if and when I come to it.

But I'm not just asking questions on Tuesday. Tomorrow, in church, I'm answering a few. My pastor is preaching on Psalm 121. That psalm begins with these words, which are familiar to many:

I lift up my eyes to the mountains—
    where does my help come from?

My help comes from the Lord,
    the Maker of heaven and earth.

Until he explained it to me, I never knew that "the mountains," or "the hills," as many of us are used to hearing, were where the pagan temples were in ancient Israel. What the Psalmist is saying in these verses is that we should not be looking to anyone other than the Lord for our help. If you've read my last post, Being There, you've read that he's the one who's really been "there for me." Unlike many people who say so, he really wants me to tell him if I need anything. Many of you have been there for me, and I'm grateful to all of you. But while I look to you for encouragement, friendship, and support, I know where my real help comes from. It comes from the Lord, the maker of heaven and earth.

My pastor intends to bring me up front tomorrow morning and ask me three questions. He sent them to me early, so I could think about them. I sent him my intended responses this morning. I've already gone on too long in this post, as usual, so I won't share everything he asked or that I answered. I'll just share this. If you want to hear the rest, come to All Saints tomorrow at 11:00 AM!

He asked why I think I have what he called a "counterintuitive peace" about my cancer. My answer is that I don't think the peace I have is counterintuitive at all. In my journey, I've seen several others with this same peace. As a believer, I'd like to think that those who feel the way I do must have the same beliefs that I have, but that isn't true. One of the most eloquent statements on the subject that I've seen came from a prostate cancer patient who believes that this life is all there is. But he's at peace. Each time I read what he wrote about it, what he said resonates with me in a big way. One day I intend to base an entire post on his words. But not yet. Maybe soon, if I get the wrong answers from my oncologist.

I could point to circumstances in my life and say that if A or B were different, maybe I'd be in the "fight" camp rather than the "accept" camp. But I'm not sure that's even true. I think it might just be my nature. No one can say how they will react when their life is threatened. It's certainly not that I was especially spiritual before my diagnosis, and that helped me take it well. Just the opposite is true. This is the first real hardship that I've experienced in my life. I now understand that peace is found when I surrender control. I was only able to do that when I had no choice.

Finally, he asked what gives me hope. Love gives me hope. The love that I continue to receive from so many gives me hope. The love that I feel so intensely for those of you who have been there for me gives me hope.

But most of all, the fact that God is so real to me now gives me hope. The fact that I can barely think about how good he is to me without breaking down in tears of joy brings me hope.

I have questions, but thank God, I also have some answers. And the answers make the questions seem trivial. No matter what the doctor says, and no matter what God decides to do, I am at peace. And I have hope because of love. #waroncancer

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