Radiation Likely in my Future (3.0)

Boy it has been a while since I updated this blog.

Anyway, I am not about three weeks done radiation. About four weeks are left to go.

Anyway, while going for radiation I have come to meet several other cancer survivors who need prayer.

Several have gone through the trial of chemotherapy. I am so thankful I have not had to undergo chemo yet.

I have met a survivor who had lung cancer 10 years ago and has survived (that is rare I think). Now she has a tumor in another location (forgot where).

I saw one man in a hospital bed waiting for radiation. My guess is that he is terminal and taking radiation for pain relief.

I've seen several women who appear younger than myself with no hair. I presume these are going through chemotherapy and radiation.

Many are transporting themselves down and back from radiation. I am thankful for the support of my wife who accompanies me on my trips (except when she has to work).

I am doing quite well. I get tired and try to take a walk daily to counteract this. Other than that, no real issues.

Radiation Likely in my Future (2.0)

Sometimes the wheels of progress grind very rapidly.

Yesterday I had my Dr. appointment with my radiologist following my third consecutive 0.1 reading.

Today I had the pre-radiation markup session.

Radiation officially begins Tuesday March 18 at 9:30 am. After hopefully a wonderful ski day at Sugarbush Monday March 17 where I will take advantage of $17. lift tickets.

Woo-hoo. It will be done by the time my Red Sox tickets kick in.

Pray for Lifeline and her husband Rob

On the prostate cancer forum I occasionally read posts from people that just make me bawl.

One such person is a woman who goes by the name of screen name of "lifeline". She has a husband "Rob" (not me) with very advanced prostate cancer. When I read her posts I just don't know what to say. It just makes me bawl.

Lord please touch Lifeline and her husband Rob. Surround them with your love and comfort. Please.

My Heros

There are a couple of forums that I follow. One baseball (for the Red Sox), a couple Christian, and one a support forum for prostate cancer survivors.

On the prostate cancer forum, I have been priviliged to meet two guys that I consider my heros. They both have web sites at Caring Bridge.

The first is Tony Crispino. Tony (or TC-LasVegas) joined the forum a little after me and had post-op statistics a little more serious than myself (one higher gleason grade..somewhat more advanced out of the prostate (stage T-3B) than mine. He has had radiation therapy and is undergoing hormone therapy. His psa now is undetectable, and I pray that it stays this way.

He is such an encouragement to everyone on the forum. Always, always positive. He has recently taken over a volunteer moderator position on the forum. His mother has just passed away from cancer. She is in a better place. Pray for comfort for Tony.

The second is Walter Whited. Walter (or War-Eagle) has more advanced prostate cancer. He has been the hormone therapy route and now I think is (or will be starting) chemo.

Walter is also such an encouragement to everyone on the forum. Never complaining about himself, his concern is for the others there.

Both Walter and Tony are definite Christians. Tony is Catholic. I am not sure what Walter is (maybe Baptist but I dunno). It don't matter. Funny thing when a bunch of guys are all fighting a serious disease, we could give two hoots about the name on the outside of the church door.

There are other guys on Healing Well that are also my heros, but just want a special tribute to these two.

The Gift of Knowing Your Eternal Destiny

I admit it. I'm a wimp.

Almost two years ago, I was facing a prostate cancer biopsy. My urologist told me it would be nothing to worry about..it just felt like rubber band snaps against the prostate..and that I would do fine without a local.

However, twelve needles being injected into my prostate hardly seemed to be a transparent procedure. The night before my biopsy I was up all night reading and researching the procedure over the internet. I convinced myself I was going to die in agony from this procedure.

The next day I walked into the doctor's office and asked for lidocaine. When I was told that this urologist did not offer it, much to the dismay of my wife, I walked out.

I ended up getting a second opinion from a doctor who did offer lidocaine. Come to find out that with the local, the procedure was not all that terrible..the worst part was the instrument up the anus (I feel sorry for urologists having to deal with people's butts all day for a living..yuck).

Now having prostate cancer, particularly the type that escaped the prostate bounds (fortunately hopefully still locally) I have found myself reflecting on death and dying. Now I know my prognosis is good, but even if I am cured of cancer, all this cure represents is a delay of the inevitable for 10-40 years or so.

I am convinced that the biggest blessing one can have this side of the grave is the gift of knowing your eternal destiny. This knowledge makes all of the difference even when thinking about the prospect of death.

Now on a scale of 1-10, I have been a reasonably well-behaved person. I don't have a prison record, I support my family, and I don't lose my temper all that easily. So in a scale of "goodness" I might have some optimism I might be in the top 50% (but maybe the middle 33%).

But gosh, I would hate to have my confidence in my eternal destiny based on how well behaved I have or have not been. For starters, I live with myself and I know how I fall short. How good would I have to be anyway to have eternal life? Certainly I have not been as good as Mother Theresa or Billy Graham or many of the saints of the ages. And when I compare my life with the one perfect life that has been lived on earth, I certainly fall far short.

Now I can turn to the Bible and promises found within it. For example John 3:16 says "that whosoever believes on Him should not perish but have everlasting life". Now this is better because it indicates that my eternal destiny is not based on how well I behave but somehow based on "believing on Him." So I am set free from worrying about somehow being good enough for eternal life.

But how do I know that I am believing on Him? What if I think and profess that I am believing on Him but really am not? After all, didn't Jesus say that many will say to Him "Lord, Lord.." but He will respond "Depart from me I never knew you". Were these folks believing on him? Or more accurately, did these folks think they were believing on Him only to find out (too late) they really were not. What if I think that I have faith but really do not.

So then I can look back on my life and reflect on how I came to start believing. I can remember that dorm room at Eastman School of Music when I prayed with another student to ask Jesus Christ into life and transform my life. And I can look upon the events that transpired shortly after this point as evidence that yest indeed my life was transformed.

But that was then and this is now. How do I know this event is still valid today. Certainly I have not renounced what Jesus did in my life that day. But could I somehow drifted away from it as the writer of Hebrews warns us about. Now maybe I could put stock in the theology that it is impossible for a genuine Christian to lose his salvation. But what if this theology is wrong (a good number of Christians don't buy into it). Is basing ones assurance of salvation on a particular theology, particularly one that is not universally agreed upon, a good idea.

What I need is more of an assurance of my eternal destiny than one that is based on (1) how "good" I am, (2) head knowledge of Biblical promises, (3) a certain theology, or (4) a historical event. I have become convinced that the best assurance I can have of knowing my eternal destiny is one that God pours into my soul. This is a gift that God gives.

Then I can reflect on what God has done in my life including how it all began and praise Him because His presence is still real in my life and He is with me today. As important as the starting point is, I think the finishing point is even more important, and Jesus is real today.

Then I can look in the Bible and see the promises of God and praise God that He is faithful because He is with me today.

As far as how good I may or may not be..who cares. That is not the point.

As cancer has forced me to reflect more upon my life and eventual death, God has been giving this gift to me and I thank Him for it.

0.1 Again

Some things in life are clear cut and nonnegoatiable. I believe Jesus was born of the virgin Mary, suffered under Pontius Pilate, was crucified dead and buried, and rose on the third day. That is just the way it is. Oh..and that the Red Sox are the greatest baseball team ever and that the NY Yankees are scum and evil. That is also just the way that it is.

Some other things in life are ambiguous. A third consecutive 0.1 on my PSA test is one of them.

When I had my last radiologist second opinion (given my stage of cancer) I finally pulled the question "What would you do". He said wait until my next psa test and see what it yields.

Some of the possible results had clear cut answers
* A rise above 0.1: Definitely go for radiation therapy.
* Decline back to 0: Wait

He hemmed and hawed though when I asked him about a third consecutive 0.1; but he finally answered that he would go for the radiation therapy..given the high stakes.

That was good for me.

Of course my most recent PSA was a 0.1. But I have not changed my mind..my thinking is clearcut..do what the radiologist would do.

My next radiologist appointment is March 12.

Radiation Likely in my Future

Lessons learned..

If you have any qualms or reservations on how your medical treatment is going, do not hesitate to get a second opinion.

And..when seeking a second opinion (that is in the nature of a consultation) have your questions written down. Your doctor will spend the necessary time with you if your questions are written.

Yesterday, I had a second opinion with a radiation oncologist. What I learned was..

Given my stage of cancer, there really are no best practices. There just are not enough data points to formulate best practices for stage 3a prostate cancer with a very low (but not undetectable) PSA level.

Still, given my PSA level and trends, it is probable that a PSA 0.1 is indicative of some ongoing cancer left after the surgery. However there is no way of confirming whether this is actually the case.

Furthermore, given my gleason (3+4), slow rate of PSA rise, and post-op pathology report, there is a good chance that whatever cancer is left is confined to the prostate bed. Of course there are no guarantees this is the case. Furthermore there is no reliable test that can be used to determine whether the cancer has moved (bone scans generally read negative anyway for very low PSA levels).

So I could conceivably have radiation therapy when (a) there is no cancer in which case it is a waste and I would be risking the side effects of radiation for no reason (b) the cancer has already moved, in which case it makes no sense because the radiation will not cure it.

However, since radiation represents my last hope for cure, these are chances I am willing to take. Remember that prostate cancer is way down there on my list of preferred deaths (my #1 preferred death is being assumed into heaven like Elijah (and Mary if you are Catholic) were but my wife is skeptical on whether my life has been on par with Elijah (or Mary). So assuming my #1 preferred death will not happen, my #2 preferred death is dying in my sleep at age 95. Actually the idea of being raptured sounds pretty good also, but I personally find most end-times theology very highly speculative (for grins and giggles read the 1970s version of the Late Great Planet Earth sometime).

Note: I'm not Catholic, but I also have no particular angst against Catholicism. Regarding the assumption of Mary, I can't say for sure she wasn't assumed (God has not recorded everything He ever did in the Bible). All I know is that God hasn't definitely shown it to us through the Bible, and therefore I am under no obligation to believe it. So as much as I know, the assumption of Mary is one of those nice extra-Biblical stories (the idea of Mary being assumed to heaven does sound nice) that may or may not be true. But anyway forgive my theological digressions here..

The net is that since radiation represents my last hope of being cured of this disease (everything after that point is about extending your life a few years in hopes that you die of something else), I would prefer to err on being overly aggressive.

I asked the doctor what he would do if he were me. He said to wait and have one more PSA test. If it rises to 0.2, by all means he would have the radiation therapy. If it stays at 0.1, to him it would be borderline, but since this is the last curative treatment available, he would still have the radiation. He would only put it off if it falls to 0.0.

I think the doctor's reasoning is sound and that will be the course of action I will take.

Wasting your cancer

I found this website on wasting your cancer.

It was written by John Piper, a Christian (Baptist pastor from Minnesota I believe) and a fellow prostate cancer survivor. Excellent read.

0.1

Well then number came in two days ago: 0.1.

It was not the 0.0 I had hoped for, but at least it was better than the 0.2 I feared.

What is this number? It is my PSA level following the removal of my prostate one year ago this month.

At the time of the operation, my PSA level was 4.7 and my Gleason score (a grade for the severity of the cancer was a not bad 6). The doctor was confident that given my stage that he thought was at worst T2 and Gleason grade, the cancer was organ confined and the operation would be curative.

However, following the operation, the pathology report found that the stage was T3a (positive margins..cancer found on the outside of the prostate) and the Gleason grade was upgraded to a slightly worse 7 (but a 3+4 seven which is better than a 4+3 seven).

Stage T3a cancer is one of these in between stages. There is a prostate cancer forum that I sometimes participate in. There are men there much worse than myself on this forum and my heart goes out to them and their families. On the other hand, there are men who have had post surgery 0.0 for years following their operation (my father being one of them). Furthermore, from what I have read in the literature, treatment for stage T3a prostate cancer is debatable. The standard is to wait until the PSA rises till at least 0.2 until follow on treatment is recommended. However, there are some doctors who recommend more aggressive treatment of stage T3a cancer on the logic that the sooner the treatment, the more likely it is curative.

Since it seems to me that the treatment for this stage of prostate cancer is debatable, I have scheduled a second opinion meeting with a radiation oncologist this December. We shall see.

Anyway, what is the prognosis for stage T3a prostate cancer? Technically I am in remission and will be until if and when my PSA rises to 0.2 (which is the standard for biochemical recurrence in the literature I have read ). However the chance of my operation having been curative is less than had the cancer been found to be organ confined.

However, the longer that it remains under 0.2, the more likely the cancer remains confined to the prostate bed and has not metastasized (moved away). This means that I still have a decent chance of being cured through what is called salvage radiation. Should the cancer metastasize, there are still a number of treatments available, but these are not considered curative. However, they could extend my life long enough (prostate cancer is a very slowly developing disease) that I could very well end up dying of something else.

But that is all down the line anyway. I am philosophical about this; even if I am cured of prostate cancer, it only means that I die of something else a little later. Still if I had my choice of deaths, #1 would be gently in my sleep at age 95 or so. Prostate cancer would be significantly lower on my list. But the choice is not mine to make.

Anyway, no matter what happens, I still have a lot of living left in me and refuse to be obsessed with stuff that I really can't control.