16) I heard you have cancer. How's that going?

16) I heard you have cancer. How's that going?

Well, I have a bad type of cancer (adenoid cystic carcinoma) in my lacrimal gland. This cancer resists chemo and is not radiosensitive. The first line of treatment is removal, and so last thursda (April 20) I had my tumor (and my left eye) removed. Other than getting this crappy kind of cancer, things have gone great. I'm lucky to have moved down here to Chapel Hill before I developed cancer. The care is really first rate. There is a big cancer center, and as luck or providence would have it, my surgeon is one of the three leading experts in this cancer in this country. Furthermore, a PET scan showed the cancer hasn't spread. That's not as reassuring as it would be for some cancers, but clearly, if it had spread, that would be worse.

In addition, nothing has hurt much. Chemo doesn't work, so I've not gotten any of that (at least not yet). There's no tissue in my eye orbit, so there's not much left to hurt. And the bad news has rolled out over time, so I've been able to adjust. I've never gotten the "Mr. Foster, you've got six months to live" speech (not yet, anyway). For my cancer, the probability of surviving 5 years is 90%; the probability of surviving 15 years is between 10% and 40%. So, it's kind of strange. With many cancers, if you make it five years, you're out of the woods. For some reason, this cancer just stalks its victims, for long periods of time.

I do feel a bit like I've been struck by lightning. While my surgeon has treated relatively many persons with this cancer, that means that he has treated 12 over nearly two decades.

I guess putting this in my blog maybe nutty, but I've decided to be pretty open about having cancer. I had a friend who had testicular cancer, and he and I have mocked cancer for some time. It helps me a great to see how Dave has handled it and how he's fared over time.

[what follows is a little over the top--you've got the basic story at this point, if you'd like to stop]

What's been the hardest part?
Hands down (so far), dressing my own wound. On that side of my face, I look like a skeleton. Looking at it is like looking into your own tomb. Oy. I'll never forget that first look. I really know what I'll look like when I'm dead. (Two weeks later, it still is a shock. Just when I think that damn hole can't look worse, it does.)

Looking, however, was also empowering. I had been dreading changing the bandage myself and had been dragging my feet. Once I did it, I really felt better. I walked out of the bathroom and said to my wife, "F-ck that hole". And my wife said, "Yea, f-ck the hole." I guess it was sort of a "screw the cancer" sentiment. (It also was the first time I had ever heard my wife say the F word.) [NOTE: My wife claims this did not happen. Honestly, I was so stunned, I guess she could have said "Would you like french fries for dinner" for all I know.]

It wasn't that hard to show up for eye removal. Really, I figured it wouldn't hurt, and I tried not to think about it graphically. (I learned that lesson a few years when I had an endoscopy. I kept thinking how gross that would be. Heck, they sedated me, and I was feeling no pain. They could have done it five times for all I cared.) So, I didn't think about the eye removal until they called me from the waiting room.


You seem to be doing well. How is that?
I think there are several reasons. One is that I have gotten extraordinary support from credible sources (doctors and nurses who are my buddies). They just keep drumming into my head, "You can beat this", "You can beat this", ...

I also feel much, much better. For at least six months, I've felt like someone drained the life out of me. Getting that tumor out really made me feel a lot better.

I also have benefited from an experience with my son. When my wife was pregnant, the doctors feared something terrible was wrong with Gabriel. So, I learned to deal with medical news as it comes and not to jump the gun. As it turns out, Gabe was just fine.

I have spent a lot of time praying, and I have a real peace about my illness. I really have tried to pray, "God, do what you think best". At first, I was trying to decide whether I needed to pray for healing or to pray for a good exit. My priest really helped me. Basically, he indicated that there was nothing wrong with praying for both at the same time.

I also would add that I've always felt like I'm living on borrowed time. My birthday should have been around mid- to late-October. I was born on 9Aug. Two months was pretty early 40 years ago. My prospects were so grim that the doctors wouldn't show me to my mom. (Only a man would think that that was a good idea.) Still, I did survive but have been left with the sense that every day of my is another day longer than I might have lived. (Not that this has stopped me from doing dumbass things on a fairly regular basis.)

Finally, I also have benefited from not absorbing some of the foolishness in American religion. I don't have to deal with any sense that God has done this to me to teach me something. I do believe that God can turn this illness into something good. But I don't think God causes cancer.

Relatedly, I don't think that God does (or can) prevent Christians or any other religious person from hardship like this. We live in a broken world. I've mostly been amazed how little this brokenness has affected me. Only North Americans have this sense that if they don't live in perfect health until they are 80, they have been cheated in some way.

Do you ever think "Why me?"?
Not really. From time to time, I do think "Why this, of all things? Why couldn't I get run over by bus or get colon cancer like a normal person?" But, no there's enough hardship in the world that I never expected to be exempt.


Are you going to look funny when your treatment is finished?
Well, it would be unfair to blame cancer for my looks. (Tumors have enough to account for.) I will get a prosthesis. (My eyelid and some bone were removed from my face, so I need more than a glass eye.) From what I've been told, I'll look "normal".

What will happen to you?
Well, no one knows for me any more than they do for you. Here's my best guess. By my reckoning, my life expectancy (without cancer) is 30 more years. (My family CVD history is poor.) I figure the cancer will cut that in half. I'll have to live twice as well to compensate. 8-)

For this cancer, I would be an outlier if I make it 15 years, but I'm feeling optomistic.


Anything else made you mad or happy?
Well, the cancer fairy is in my dog house. I put my tumor under my pillow, and that cheapskate only gave me $10. See if I grow any more tumors for him.

Any part of this been funny?
Oh, yea--lots of funny things have happened. I really wanted to get my tumor into a tumor registry at UVA. My surgeon was quite agreeable to helping me. Some special procedures were required, and he did his part. And then we sent the tumor over to pathology. The dang pathologist lost it for a few days. My surgeon sent a rather mild e-mail scolding him and implying that the pathology department was disorganized.

I guess that upset the folks over there. My surgeon asked me, "do you think I was too harsh?" Like I'm the person to ask about inflammatory e-mails. I told him, "I would have asked, 'how do you a-holes lose a freakin' rare tumor. Maybe you shouldn't drink on the job.' That seemed to make my surgeon feel better. The tumor was eventually found in a freezer, presumably next to the dove bars.


What have you learned?
1) I have some mighty fine friends.
I've been shocked by the number of people who seem to be earnestly praying for me.

2) I'm a little tougher than I thought.
One time I was lost in the Idaho wilderness and really kind of gave up. It gave me the sense that I was a bit of a wimp. (My friend, Jay, more or less dragged me out, but not before I nearly drowned--a story for another day.)

Now, I do feel a little tougher.

[Honestly, I have more lives than a cat. I should have died at birth (#1); I did something really stupid in a car one time and escaped through good fortune (#2); I nearly drowned (#3); and now this (#4). Good thing I've got five left!]

[Addendum: Several people have commented that I'm "brave". I think it would be fair to note that I do have days where I'm a bit scared, as anyone would be. I ask my wife virtually every day, "So, you think I can survive this?" On the bad days, the question is "This damn cancer is going to get me, one little piece at a time, isn't it?". My wife always answers "yes" to version a and "no" to version b.]

3) I'm more or less doing what I want to do with my life.
When I really thought my goose was cooked, I was not left with the sense that "Gee, I'm dying and I've wasted all this time doing X when I wanted to do Y." About the only thing I"m changing is that I'm going to stop putting off Viola lessons!

4) Worrying about what's going to kill you is pointless.
Damn, my family CVD history is terrible, so I've monitored my BP, etc., closely.
And heck, my eyeball was trying to kill me behind the scenes, really without symptoms.

5) Don't suffer alone.
I told more folks about my cancer than I anticipated. I figured, "How can I hide this big bandage or my missing eye?" It was the best thing I could have done. The support I received have been so helpful.

6) I'm a control freak or at least over-scheduled.
Ok, so that may not come as a surprise to folks who know me.

But still, I swear I think I'd prefer a certain but shorter prognosis to an uncertain one. Just let me know that I'll die in 10 years 234 days 6 hours, and I'll put it in Outlook. Then I'll drop dead right on time.

5-24-06
7) Don't ever say, "There's nothing weird left for the doctors to do to me."
That would be foolish. I thought I had reached that stage. Today, I knew I had a chest XRay and a MRI. No problem. I'd been in the "tube" for CAT and PET scans, so I'm not claustraphobic. And what's a little chest x-ray.

Part III was something called a "simulation". I knew it was prep for radiation. I figured it was sizing up my nogin and drawing a bullseye on it. Again, no problem.

However, I laid down on the table, and the nurse says, "We need to make a cast of your head". Ok, I figured that would be no problem. She says, "I'm going to lay this wet rag on your face. It has eye holes, and you can breathe through it. Don't worry." (Lesson 7b-when the nurse says 'don't worry', it's time to panic.)

So, she covers my face up with this mesh. I'm thinking, "Well, this isn't so bad". Then she starts applying pressure. Basically, my face started feeling like I was at 10g. Even better, after a minute or two, the thing starts getting hard like a cast. And it was a little long, so it hung down on my adam's apple, preventing me from swallowing. This is not going well. So, I grab the nurse's arm and point to my throat. Fortunately, she understood what was happening and bent the thing back so I could swallow.

Thus endeth lesson 7.