The Struggle Has Ended

Greg Hewlett passed away on January 17th after nearly eight years of battling colon cancer. While we grieve his loss, we are comforted to know that he is with his Lord.

If you would like to leave your thoughts on Greg, please see this thread.

If you would like to make a charitable donation in Greg's honor, please see this thread.

Friday, December 24, 2004

Rest beside the weary road

And ye, beneath life�s crushing load, whose forms are bending low,
Who toil along the climbing way with painful steps and slow,
Look now! for glad and golden hours come swiftly on the wing.
O rest beside the weary road, and hear the angels sing!

It Came Upon A Midnight Clear, Edmund Sears, 1849

Monday, December 20, 2004

Schedule for surgery, etc

The surgery is confirmed for February 18. I am (relatively) very glad to be having this because the way cancer works (in my amateur yet ever increasing understanding), chemo can shrink and stabilize cancer and can kill very small tumors. But in order to be cured, you have to get rid of it all. In many types of cancer, such as mine, this means physical removal of all cancerous cells. As horrible as surgery is, it is minor compared with the alternative. Come to think of it, I guess that's the whole idea.

The area of concern is physically located within the pelvis. Dr. Rodriguez-Bigas says it is like trying to do surgery in an ice cream cone from the top. The problem is that there are so many important organs, nerves, and miscellaneous anatomical tubes crammed into the cone. That is why he will be doing it together with an extra pair of hands - those of Dr. Wood, who is another surgeon at MD Anderson. They way I understand it, he is a specialist in these ice cream cone surgical techniques.

On another note, Dr. Hoff's team has decided to continue my chemotherapy to keep hammering on the tumor, increasing the chance of success of the surgery. While I have always decided in the past to do my chemo at MD Anderson, I have decided to do the next two rounds at UT Southwestern in Dallas. In the case of trouble and complications, I believe it is important to stay "on the radar" of the team at MD Anderson. But I'm going to do it here because these rounds are going well in terms of any odd reactions, and because I am getting very fatigued and sick and the travel is getting difficult. The MD Anderson and UT Southwestern people have agreed to this arrangement.

While I am quite frustrated due to my lack of strength and my feeling sick these days, it will be better to be at home for these coming holiday weeks than driving back and forth on I-45. So I am glad this plan has worked out the way it has.

Here is the plan:
December 28 - chemo round 5 in Dallas with backpack chemo hookup for 48 hours
Jan 10 - chemo round 6, same deal
Feb 8 - CT scans to get final look before surgery. If no surprises or new cancer, surgery will go forward
week of Feb 15 - set of meetings with lead surgeon Dr. Rodriguez-Bigas, Dr. Wood, and Dr. Hoff
Feb 18 - Surgery. Recovery is 5-7 days in hospital, followed by 5-7 days in Houston area
Feb 19 - I turn a hard-fought-for 37.

Thursday, December 16, 2004

Pushing the envelope

We're trying to pack up to get back to Dallas, but I thought I'd give a brief update on how the meeting went this morning...

Dr. Rodriguez-Bigas is willing to do the surgery. As he put it, he's willing to "push the envelope" in my case. The surgery is difficult, involved (probably two surgeons) and has many risks. He said two years ago he wouldn't even be having this discussion, but with the newly available chemo agents, taking out isolated metastatic tumors like this one may be worthwhile towards hope of long term survival.

I'll write more later, but surgery plans are in the works. It looks like it will be Feb 18. I think they are going to have me continue with at least two more more rounds of chemo before then.

More details later...

Tuesday, December 14, 2004

Getting by with a little music from my friends

I have always felt so fortunate to be surrounded by family and friends with such musical talent. I grew up going to bed listening to my mother play piano through the walls. My sister Julie grew into quite a pianist continuing to study performance into her adult years. And Susan's voice can calm a soul as turbulant as mine.

My roommate at Rice gave me informal guitar and mandolin lessons, as did a close friend from MIT, Kohichi Tamura. One of the favorite memories of my life was living in a house as a student in Boston with a collection of roommates from Berklee school of music, Boston Univ classical music program, and New England Conservatory. I wish I had recordings of those ad-hoc jazz sessions resonating throughout that 200-year old wood house.

CDcover-150x150.jpgOur friend from Rice, Judy Wu, who has been a help to me from her job as physician assistant at MD Anderson, just released her first CD. We just missed the relase party last weekend here in Houston. Yesterday, she stopped by with the CD to my outpatient room while I was receiving chemo. You can listen to some of it (and order it) here.

And my friend Nils Jonsson, whom you have heard about in past posts, has a few unpublished recordings of music he has written and performed at his church. Two of my favorites are a jazz tune, Can't Believe You Love Me, Too and a sacred praise chorus, I Believe. One evening while I was in the hospital recovering from surgery, Nils came to visit and wheeled me down into the atrium, where he played these and other tunes on the grand piano as I and several other random people whose lives were entangled with cancer listened. It was one of those good memories sprinked among the darker ones.

It may be a tired saying that music can reach deeper than mere words, but I don't know how else to put it. The Bible speaks of young David playing for his king, Saul: "Whenever the spirit from God came upon Saul, David would take his harp and play. Then relief would come to Saul; he would feel better, and the evil spirit would leave him."

These friends have made me feel better. And these days, I need this more than usual.

Meeting with surgeon Thurs morning

We will meet with the surgeon, Dr. Rodriguez-Bigas, first thing Thursday morning. Long term, it is important that we surgically remove this tumor. From speaking with his R.N. today, I am thinking he is going to bring up all the risks (there are many) and question whether it is worth it. However, he does like to say "I never say never and I never say always." I think he may be willing to do it. At least I sure hope so.

One other note. His surgery schedule is full all January. So the earliest that surgery is possible, should he be willing to do it, is the first week of Feb.

Monday, December 13, 2004

Some good news

Some good news.

The scan results are in. The chemo is shrinking the lower abdomen tumor. This is not a given with my type of cancer so it is encouraging. We are not taking this for granted and thus are very thankful.

The longest dimension reduced from 2.8 to 2.0cm. A little 3-D math tells me that could be a reduction to half the previous size (I don't know the other dimensions). Dr. Hoff said it shrunk pretty remarkably given I've only had three rounds.

Now it is time to talk to a surgeon. Dr. Hoff and Dr. Vauthey have decided that Dr. Rodriguez is the best surgeon to do this. The problem is that it is an unconventional surgery, thus he may not want to do it. Typically, for colon cancer, surgery is only done on the primary tumor and on the liver if it has spread. As I've said before, Dr. Hoff thinks with the new chemo drugs that have come out in the last couple years, there is some hope that beyond those locations, the cancer may still yet be stopped. It is also a difficult surgery. But I am young and (relatively) healthy and am willing (actually eager) to do it. These things Dr. Hoff said are significant. He said to hope for "goodwill" on the part of Dr. Rodriguez. So there's my prayer request. The next thing that has to happen is for Dr. Rodriguez to agree to perform the surgery. If he does, we're probably looking at a mid-January operation.

I'm trying to get a meeting arranged with Dr. Rodriguez tomorrow, when he is in clinic. Dr. Hoff said it would be good to meet with him face to face about this.

I begin round four of the chemo today this afternoon. Dr. Hoff wants to keep pounding on the cancer - no breaks allowed.

Step by step certain things have to happen, and they have up until now. This is yet one more step.

Sunday, December 12, 2004

Results tomorrow

Some updates...

Tomorrow morning I meet with Dr. Hoff to find out the results of the scans I had on Thursday. We'll find out how well this chemo is working.

I will likely also begin my fourth round of chemo tomorrow. It is the same brew minus the Avastin, which the body needs to completely recover from in order to have surgery. I will once again (possibly for the final time) have the fanny pack for 48 hours delivering 5-fu to my body.

As Christmas nears, I remind you of my post a year ago yesterday... the Twelve Days of Chemo.

Lisl Tyson's husband Steve has put together a tribute site to her.

Saturday, December 4, 2004


tyson_family.bmpChristine and I are mourning the loss of a dear friend, Lisl Tyson. We became very fond of Lisl and her family (husband Steve, children Maggie and Ben) while living in Philadelphia. We were particularly good friends with her parents, Dick and Jean Gaffin, who opened their home to us many times while we were living there. Lisl died yesterday afternoon. Our hearts go out to the Gaffins and Tysons.

I regret not talking with Lisl this past year. From her emails, she seemed to be developing such wisdom as she struggled with issues of life and death. I wish now I could learn more from her. To me, she seemed to grow in faith of her Lord as she knew that she could not grasp all the things of this world. Most of us are so easily satisfied with the world because we are not forced to savor the quiet beauty of reality. Lisl knew this beauty. And I am trying to.

As I have battled cancer at the same time as Lisl (she was diagnosed in October 2001), I felt as though I were struggling alongside her. In my opinion, we both got a raw deal with this disease. But in this sad situation, I was not alone. Now I must say goodbye to her. And I am resolving to fight on with increased vigor. I think she'd want me to keep up the good fight. And do so in the beautiful reality of the Kingdom of God.

I liked what Lisl wrote in August:

I�ve has spiritual highs and lows. In church a couple months ago I had this realization. I always say that I want God�s will to be done. I mean that. But I�ve always tried to squirrel away my life-span and not really give up my desires for that. I decided that even if I have to die that I want that if God wants that. We think we have so much control. But we don�t really at all. I wonder why I�ve always fought God, because I felt really relieved after that.

Please don�t get me wrong. I�ve waffled on that quite a bit since then. Just last night I had a pity party and actually said things like: this isn�t fair, why do jerks get to live long, useless lives. You get the idea.

I�m not giving up. I am being very honest. Please pray that something will happen. Even just my hair growing all the way back!

That was Lisl � honest faith. The kind I find in the Bible � not the pop, denial-laden stuff that keeps us happy but doesn�t sanctify us or stand firm in true times of trouble. Lisl was a real saint.

This morning, her husband Steve, wrote:

While I am experiencing this baseline sense of sadness and loss of my wife and my kids' mom, and miss the most real and honest, thoughtful and caring, loving and lovable person I ever knew, I am struck most immediately by God�s mercy in the way He took Lisl to be with Him, and the grace and peace He is lavishing upon her family right now. I know personally that many of you were praying for this very thing yesterday. Thank you for the wisdom and fervency of your prayers. I hope your sadness will also be tempered by this sense of God�s goodness.

It is indeed tempered, Steve. But as I think of Lisl I must admit I am still groaning�

For the creation was subjected to frustration, not by its own choice, but by the will of the one who subjected it, in hope that the creation itself will be liberated from its bondage to decay and brought into the glorious freedom of the children of God. We know that the whole creation has been groaning as in the pains of childbirth right up to the present time. Not only so, but we ourselves, who have the firstfruits of the Spirit, groan inwardly as we wait eagerly for our adoption as sons, the redemption of our bodies. Romans 8:20-23

Wednesday, December 1, 2004

Baseball perspective

After mentioning my latest hospital visit -- to Johns Hopkins in Baltimore -- I received a comment from Dave Thom. He always has a way of keeping things in perspective. He wrote, "Some people track how many baseball stadiums they've been to. (8* for me.) I bet you could count stadiums AND hospitals. What's the count?"

The good news is that I have indeed visited more ballparks than hospitals for treatment:

Springfield Presbyterian (birthplace)
Children's Medical, Dallas
St. Paul, Dallas
Richardson Medical, Dallas
Methodist, Houston
MD Anderson
Johns Hopkins

Ball parks
San Diego Jack Murphy Stadium
Dodger Statium
Old Anaheim Stadium - the big "A"
New Anaheim Stadium
Metrodome (Seattle's old one)
Coors Field, Denver
New Comisky
Minute Maid Park (new Astros)
Arlington Stadium
Ballpark in Arlington ("Ameriquest", ugh)
Yankee Stadium
Memorial Stadium - old Baltimore
Camden Yards (my only fly ball)
Vet, Philly
Fenway Park (including one game with Dave Thom)

Thanksgiving break


I have not been up to writing lately. I've had a cold that lasted two weeks. My theory is that the chemo kept me from recovering quickly. I am just now getting over it - in time to take round three. Currently, I am hooked up to the fanny-pump, which is trickling in the beneficial poison.

Although I was feeling poorly, we decided to take a short-notice trip to Christine's family for Thanksgiving in Maryland. My schedule was looking chaotic during Christmas and the chemo wears on me a little more each round. So we figured now was the time to visit. I mostly slept, which is what I would have been doing in Dallas. Besides my feeling crummy, we had a wonderful time with the family. We were especially happy to meet our newest neice and goddaughter - Mia, who is in the photo being held my her dad, Margus.

melina_sm.jpgWe spent a couple days in Glen Ridge, NJ, where both of Christine's sisters live. Christine got to watch Melina and Sarabeth in the community theater production of Oliver. Afterwards, they acted most of the musical out for me at home - Melina is singing "Where is love" in the photo.

Last Tuesday, we had a small scare with a fever I developed. Because this chemo can cause white blood cell problems, my doctor told me to go to the ER. So Carl, Christine and I spent the night at the Johns Hopkins ER in Baltimore. My counts turned out to be good, which meant it was a normal fever associated with the virus rather than chemo related trouble.

Dr. Hoff has changed my schedule a bit. He wants to get the CT scans after round three, not after round four. If the chemo is showing effectiveness, I will still get a fourth round. He just wants to get a jump start on working on "twisting the arm" of a surgeon to work on me - either on the lung spot or the lower abdominal spot. He is still hopeful with the new drugs that we can kill any spots that aren't showing up on the scans while surgically removing the ones that are.

Thanks for hanging with us and for joining us on your knees before our Lord to whom we give thanks.


Sunday, November 14, 2004

Round two

Wow, that was quick. We enjoyed being home this week, which went by too quickly. Wednesday was Christine's birthday and we celebrated with my sisters' families and my parents over at Mom & Dad's house.

Christine's migraines have been extrordinarily bad this week, so we felt she should take a break this round so mom and I drove down tonight for round two. Christine should be ok without me, for she has Dolce with her.

Chemo begins tomorrow morning. As before, it is administered over 48 hours. Only the first 4-6 hours will be in the hospital, so no overnight stay this time. Then we'll drive home Wednesday, Lord willing.

I feel like I live in Houston and that I just took a short vacation to go up to Dallas. I cannot stay away from this town! Everytime my mind begins to clear, I once again find myself confronted by Marvin Zindler and Gallery Furniture ads.

Wednesday, November 3, 2004

Finishing up chemo

There are four drugs in the chemo combination they are giving me: avastin, oxalyplatin, leucovorin, and 5-fu. They give them sequentially over about five hours. Then they send me home with a chemo pump fanny pack to adminsiter the 5-fu over 48 hours.

To avoid allergic reaction, they gave me a combination of four drugs before the chemo. They knocked me out cold. Christine stayed up most of that night to keep a close eye out for any reaction. The good news is that there was no reaction at all, not even at the level I had from my allergy to cisplatin, a drug I took years ago that is related to oxalyplatin. This means I'll be good to go for more of this stuff.

They observed me as an inpatient for the first day of the chemo. Last evening, I was discharged. I've slept most of the day. The chemo is draining, but I'm not feeling too sick. Tonight I'll unhook the pump when the infusion is complete - Christine and I took a class to get "certified" for removing it ourselves. Otherwise, we would have had to go to the E.R. because the infusion ends tonight after the infusion department closes.

Next round is scheduled for Nov 15. We should be headed back to Dallas soon to enjoy the time until then at home.

Tuesday, November 2, 2004

No allergic reaction

I'm having computer problems, but wanted to let you know that there were no allergic reactions to the chemo! More to come...

Monday, November 1, 2004

Checking in to the hospital

Cancer cells begin dying today. I am headed over to the hospital to check in for chemo. They will probably be giving it to me in a couple of hours. I will be there until mid-day tomorrow. They will be keeping a close on me because based on my history, I havce a high chance of having a bad allergic reaction to one of the drugs. The chemo specialist told us that I will be getting at least three powerful premeds to avoid reaction. They are overdoing it. Sounds good to me - anything worth doing is worth overdoing. I'm not too concerned about the reaction itself, I just don't want them to discontinue giving me this chemo due to any problems. The bottom line is that I need it.

Lord, use this stuff to do shock and awe on that tumor.

Thursday, October 28, 2004

Installation complete

Dr. Walkes successfully replaced my port this morning. There was a possibility that he would have to take out the existing one on the left side and place the new one on the right. While I may have enough scars to compete with a Deep Ellum sporter of tatoos, I am not exactly looking for more. Fortunately, he was able to clean out some internal scar tissue around the old port and put the new one in the same place. This keeps a clean shoulder pillow for Christine's head on my right side - something we were glad to keep.

I'm now playing the ol' familiar game of vicodan+drowsiness vs. pain+alertness. After recovery, we went back to MDACC for an appointment to learn details about the chemotherapy administration and side effects. I had popped a vicodan and was in drowsiness mode at the time, so I don't remember much of what was said. Christine took notes, so I'll ask her about it and get back with you on that later.

Wednesday, October 27, 2004

Port-o-cath surgery in the morning

I cannot remember having medical scheduling run more smoothly. I was able to get in touch with Dr. Walkes, the surgeon who did my port-o-cath surgery last year. He remembered my case and opened up a slot to do the replacement surgery tomorrow morning. His assistant was able to get the insurance and hospital surgical reservation all set up. He will perform the 10a.m. surgery at Houston Methodist hospital, which is near MD Anderson. It should be a day surgery this time. This is all good because it will have time to heal before chemo administration on Monday.

New plan of attack

Dr. Hoff and his colleagues have decided upon the new plan of attack. He would like for me to do 4 rounds of chemotherapy. If the abdominal tumor shows a reduction in size, then surgery would most likely follow. Because the cause of the lung spot is not certain, we'll wait to deal with that later.

Apparently, traditional thinking (up until about 5 years ago) is that if colon cancer has spread beyond the colon and the liver, then it is incurable and is only treated with the goal of extending life. But Dr. Hoff says that attitude is changing, although the issue is still debatable in the field. He assured me that he is still approaching me with the hope that we will be able to get rid of all the cancer and I will have long-term survival. To that end, the plan he has for me is the most aggressive.

The chemo protocol is currently the front line drug combination they give to new patients. The protocol is called FOLFOX with Avastin. It was experimental when I began this 19 months ago and has since been approved by the FDA. I had tried to get on that trial, but was unable to do so because I have had allergic reactions to a related drug. So I was on another regimine.

I am hoping to begin the chemotherapy on Monday. I am glad to see they are taking every precaution in my case. They want to admit me into the hospital for the first day of round one so they can carefully observe me and deal with any allergic reaction I get. Part of this will be premedication with some special drugs to prevent or mitigate any reaction. Some of the possible reactions are serious - they have to do with my ability to breathe.

My port-o-cath is not working well. (This is the pod - connected to a catheter to my heart - that is surgically placed under my skin. Chemo is injected into it.) I am scrambling to get in touch with the surgeon who placed it back in July '03. If I succeed in getting it scheduled, I will have port-o-cath replacement surgery done at Methodist Hospital here in the Med Center Thursday or Friday.

I am viewing all this as simply taking care of an area of cancer in my body that was not dealt with yet. There is no evidence the cancer has not spread to anywhere new since I was diagnosed in June 2003. I am still fighting the odds here, but fight I will. I have won some major battles in the past 19 months against this stupid disease. I just need to win some more. If the Red Sox can win 7 straight in the post-season, anything is possible.

I appreciate your prayers that the chemo will not cause any major problems and that it will sufficiently shrink the tumor towards the end of being cancer free.

Monday, October 25, 2004

More battles ahead

The biopsy returned positive - the nodule in my pelvic region is cancerous. I'm not considering this a remission. There still is nothing new that wasn't there at the beginning. It was there in June 2003, only no one really noticed it because it is in a very rare place for my type of cancer to spread. So I am hoping and praying that they will agree to surgically remove it.

I asked hard questions of Dr. Hoff. The discussion was odd because I sounded to myself like I was arguing ideas back and forth with him as I normally do with others in life. Only here I was arguing for my life. I get the feeling the normal approach in my situation is to avoid the risks and hardships of surgery and just try to slow the growth of the cancer. But I am young and healthy and just the kind of patient they treat aggressively. He understands my desires and is approaching this as aggressively as necessary. In other words, he is still shooting for long term survival - getting rid of all the cancer.

The lung spot cannot be biopsied because it is too small. So it is impossible to know conclusively whether it is cancerous. But there are some good reasons to begin by taking it out first, which is where Dr. Hoff seemed to be leaning.

Dr. Hoff took my case to conference this afternoon to discuss with his colleagues. There are not many precedent cases, which I take as a positive - they are paying close attention to my case and are willing to shoot for curing this. By now the conference is over, but I won't find out until tomorrow their conclusions. The next step, to begin as soon as possible, will be either pelvic region surgery, lung surgery, or chemo followed by surgery. Sounds like fun.

Tuesday, October 19, 2004

Biopsy complete - no problems

They gave me plenty of drugs, so I was quite comfortable during the biopsy. I was just awake enough to follow what was going on. I found the gadget and process to be quite interesting. Then again, I might have thought anything was interesting in my inebriated state. The doctor guided a long narrow sleeve needle into me bit by bit, each time taking another CT scan to make sure it was going into the right place. Then at the end he shot the biopsy syringe needle through the sleeve to get the sample. We'll hear the results Monday. Meanwhile, I'm feeling a bit loopy and I have a big patch on my rear.

Biopsy today

The biopsy is today at 1:00. It is not as risky as the liver biopsy, and they said they always give the patient enough system anesthesia to make him comfortable. So I do not think it will be like the one in Dallas last summer. They are going into my lower abdominal area from behind and below. In other words, recalling Forrest Gump, I am going to get shot in the buttocks.

Dr. Hoff, who is usually very slow to speculate, said this nodule, as well as the nodule in the lung, is very likely cancerous. I will meet with him Monday to get the biopsy results. If it is positive for cancer, I will likely begin another regimen of chemotherapy. The hope would be for shrinkage and surgical removal - much like the plan for the other tumors. These are not really "new" spots, as if the cancer is spreading. They both show on the CT scans of June 2003, when I began all this. So I'm just going to view it like we haven't finished the job we began.

Enough speculation... Step one - get through this biopsy and then wait for results next Monday. Step two - another PET scan on thursday. One step at a time.

Saturday, October 16, 2004

Disappointing news

The disappointment sitting heavy within me is keeping me from being able to express much today. I'll try to cover the highlights.

Dr. Vauthey seemed quite concerned. The nodule has grown. This is the spot that they tried to biopsy back in July, but which showed negative for cancer. It is in my lower abdominal area just outside the intestinal track. This thing - whatever it is - seems to have have grown significantly to 2.5cm. So they are going to do another biopsy this week.

In addition, there is a small spot on my lung that was not there in July. It is too small to say anything conclusive about it. We'll be keeping our eyes on it.

Monday, I will meet with the biopsy doctor to find out more about the procedure, including when it will be. They will do a CT-scan-guided external biopsy this time, so they can be sure they hit the nodule. I imagine it will be like the liver biopsy I had last year, but I hope not.

There are a few encouraging signs. The intestinal nodule is in a place Dr. Vauthey has never seen colon cancer spread. And the PET scan in July showed no signs of cancerous activity, even with the nodule present at that time. Also, my CEA remains a somewhat low 4.5.

Christine and I are thankful to all of you for your support in prayer.

Wednesday, October 13, 2004

First tests during remission

The days have turned into weeks and months since last visiting MD Anderson. (And yes, since I have written!) I am now in Houston for my first full round of tests since going into remission. The last few months have been full of relief and thanksgiving. Christine and I have enjoyed the time together at home without the chaos and uncertainty that filled our lives the past year.

Our trip to Yellowstone was wonderful. We did not want to come home. I hope to put some pics up soon. Last weekend, I traveled to Catalina Island for a little fishing and golfing on the occasion of my brother-in-law's birthday. Michael Murray is 40!

I will hear the results of these tests by Friday. Lord, have mercy on me.

Sunday, August 22, 2004

Tenth anniversary, take two

Almost two years ago, Christine and I celebrated the tenth anniversary of our life together. We decided to celebrate by going out west to the Tetons and Yellowstone. We planned the trip for late last summer, when the weather there provides a nice relief to the Texas heat. Little did we know what that summer would bring. The cancer treatment forced us to cancel our trip. This was a deep disappointment, in part because it seemed to be a microcosm of the severe disappointment we faced in life.

Tomorrow, I am glad to say that we leave for the second try. This time, the trip seems far sweeter. It is not just a vacation, but a celebration that we can even enjoy each other at all.

Christine had her epidural injection I wrote about and a second one last week, with no positive results. In fact, the migraines and neck pain have only gotten worse. But we're going to do everything humanly possible to get on that plane tomorrow morning.

When we look back at the disappointment of canceling the trip last year, it makes us ever more thankful about this trip. At that time, one commenter wrote, "God has a better trip planned." I could only hope she was right. It now looks like that she was.

Thursday, July 29, 2004

C-Leg Folklore

My leg makes its way into the American political fray...

D o o n e s b u r y. T h u, J u l 2 9, 2 0 0 4

Tuesday, July 27, 2004

Procedure today for Christine

Christine_bw.jpg While my health improves the further I get from chemo, Christine's condition continues just as it has this past year of cancer. And just as it has since long before. She is affected by migraine headaches several times per week and almost daily suffers from other body pain. Last week, a migraine as bad as she ever has had sent us to the E.R. so she could get an intravenous treatment called in by her neurologist. It knocked her out for 24 hours and got the pain back to a manageable level.

An MRI taken several months ago revealed a bulge in between two vertebrae in her neck. Her doctor thinks this may be a trigger for her many headaches. This afternoon, she will be having an epidural steroid injection into the spot under the guidance of a CT scan. There are no guarantees it will do anything, and if it does the relief is not permanent. Nevertheless we are hoping this will help. The improvement takes around ten days to kick in. She has had to keep canceling this procedure due to accommodate my ever-changing medical calendar.

Chronic pain such as Christine's is an odd thing. It does not have the urgency of deadly disease such as cancer. But often in the past year I have thought that it is in many ways worse than cancer. To be sure, cancer can kill. But it usually lasts a relatively short time before it is gone - one way or another. And it makes you into a hero. Chronic pain, on the other hand, just lingers quietly and mercilessly for years, trying to break the will required for daily living while the active world around you seems to just leave you behind. (Christine jokes that she was going to title her autobiography "Left Behind" until someone stole the title).

My heart is broken over Christine's condition. Perhaps the reason I have not said much about her pain in my entries is because I have not been thinking a whole lot about anything beyond my own serious condition. Or maybe I just don't know what to write -- there is not much about another day of migraines that can be said to be "news". In any case, I hope that those who are praying for my cancer to stay far away might also ask the Lord for relief for Christine. She really needs a break.

Saturday, July 10, 2004

Roses e'er blooming

rose_sm.jpgA couple of weeks before Christine and I left for our trip to Houston, I noticed my rose plant had a serious case of black spot fungus (Diplocarpon rosae). So I drastically pruned the plant back, removed all leaves showing the disease, and cut out the parts that had already died. As a novice, I had no idea whether it would survive. When we returned this week from Houston, I was greeted in my backyard with an abundance of roses on the plant. I'm so delighted by it's strong recovery.

Even my backyard seemed to be rejoicing at my good news.

pots2.jpgOur neighbor Joanne continued watering our potted plants past when we told her we would return. The original trip was only to be a few days, as you may recall. While in Houston, we totally forgot about it. Late in the trip, we remembered and figured everything would be dead. Instead, upon return, the pentas were much larger - pink and full. The red hibiscus was just about to bloom this morning when I took this picture.
And I cannot resist including a photo of my gardening assistant...dolce_backyard_sm2.jpg

Friday, July 9, 2004

Good news just got a little better

I spoke this week with Steve Wei, the physician assistant of my surgeon. My case was inadvertently presented to two different conferences (once by Dr. Hoff and once by Dr. Vauthey). This gives everyone more confidence as both teams came up with the same conclusion. The nodule has become less of a concern, because both teams studied my CT scan history and noticed that the size of this nodule has been shrinking and growing - it was smaller in Dec 2003 and Mar 2004, but was as big a year ago as it is now. They aren't sure why, but this made them all the more assured this is not a cancer recurrence. I offered to Steve that it might have something to do with baseball season, but he didn't think so. Also, the preliminary thought that there was scar tissue was a misunderstanding of some sort. The official report says all the biopsies showed normal, healthy cells.

The conclusion of the matter - definitely no more biopsies on the nodule and I don't need to go down there for three months instead of two. "October" sounds so wonderfully long from now.

AJJ.jpg Last night Christine and I got together with some family for a small celebration. We should have taken more photos, but Mark did take this shot of Avery, Jordan and Jeremy. They seem happy about the news, don't they?

Tuesday, July 6, 2004


I met with Dr. Hoff yesterday and he has decided that I will take no more chemotherapy. Thus, I am done with treatment and am considered to be in "complete remission". The term he used for my status is "Stage IV cancer, NED". (No evidence of disease). It is an oxymoronic term, as Stage IV is cancer at it's worst, but NED indeed starts with a capital "N". I shall bear the label gladly.

I now begin a period of returning to MDACC often so that they can watch carefully for any recurrence of the cancer. This will be something I will be doing for a long time to come (hopefully!). At the start, I will go down there two months from now. I went through a similar process after I had bone cancer as a child.

As for the lower abdomen nodule that seemed to grow, they have no explanations. The biopsy showed some scar tissue, which was perplexing because I did not have surgery there. This is something they just want to keep a close eye on.

I was a bit surprised Dr. Hoff decided against chemotherapy. The bottom line for him is that there is no good evidence that more chemotherapy at this point would make any difference in long term survival. Some doctors give as much as they can get away with -- "just to be sure". (Reminds me of the motto of a certain father-in-law - "anything worth doing is worth overdoing.") Dr. Hoff's response to this is "show me the data." If there were no detrimental effects of the chemo, he said he might be inclined to give me more. But the Xeloda I took after liver surgery was really wearing on my liver. Not only did the CEA climb, but my liver enzyme numbers were telling a story that the drug was damaging my body. To Christine and I, he seemed overall to be making the most life-affirming decision.

Dr. Hoff tells me that there is about a 50% chance that I am cured. We will not know until years have passed. This is far better than the dismal numbers (under 10%) I started out with. I thank you all for your earnest prayers for me. Would you continue praying that this will not return?

Saturday, July 3, 2004

"Good news"

When Dr. Vauthey opened the door to the examination room, it ended a nine-day grueling wait. "Good news", he said. All six biopsies tested negative for cancer. I sat stunned, overwhelmed with relief, gladness, and thanksgiving. After the short conversation and departure of Dr. Vauthey and his cohort, Christine and I sat there quietly for a moment. There were no words. Together we whispered "Praise God from whom all blessings flow..."

Around here, there always seem to be cautious nuances to be made, and this case was no exception. It is possible that the six biopsies missed the nodule. As you may recall, it was nearly impossible to see the nodule with the ultrasound. But that is why the doctor took six shots at the area. Also, there was an odd finding of scar tissue in the area. This area happens to be one of the places where I have actually not had surgery before, so that remains an unresolved question. Because of these two issues, my case will once again be presented at the weekly GI oncology conference next Tuesday to determine whether further investigation is needed. Dr. Vauthey indicated that he is content that we are not looking at a recurrence and that I will most likely not need any further investigation at this time.

We will stay here through Monday, when I will meet with Dr. Hoff to chart out our plan of attack from here and decide whether more preventative chemotherapy should be taken at this time.

The past week has been one of intense struggles deep in my soul. Parts of my mind were constantly in combat with others. Trains of thought were stopped by reminders of truth, which were in turn undercut by chaotic deconstructions. The dark cloud of death, which is ever present in all of our lives, seemed so close to me. Engaging in intentional distractions or platitude thinking only seem to make things worse for me. I need something stronger. Scripture was usually the place where stability could be found. Additionally, my wife and my dear friend pastor Robert Cook from Christ the King Church helped me in my deep tactical maneuvering. Also helpful were expressions of support from those sharing my burden - the Jonssons and Ragans, my family, and many others of you. I believe that I reached a rare quiet point of spiritual victory the morning of the appointment. That morning was quite sweet even though I did not know the outcome of the test.

It is only after the battle that I realize just how difficult the struggle was. In the hours since the appointment, every ten minutes or so, I breathe a hearty sigh and drink gladness that this particular battle is over. I look back on this week with great thanksgiving. I believe I have a greatly improved arsenal of applied Christian truth. I believe it was a very cathartic week... a time of getting to know myself clearer and my Lord closer. This is a good thing, as there will be more battles to come.

Wednesday, June 30, 2004

Procedure complete. No definite results.

Dr. Lee performed the procedure this morning after my vital signs proved to be normal. During the colonoscopy, he hopefully obtained useful tissue samples of the nodule. I say "hopefully" because it turned out that not only is the nodule in an "obscure" place, but it appeared nearly the same as the surrounding tissue on the ultrasound. Thus, he couldn't tell where to aim the biopsy needle. So he took six biopsies in all, using last week's CT scan images as a guide. I am reminded of the blindfolded guy who throws daggers at the spinning girl, but I doubt Dr. Lee would put it that way. He really does seem to be a fine doctor and he probably got the samples he needs. With all the searching and numerous biopsies, the procedure took two hours. That is about the duration of my original colon surgery! It made no difference to me, as I was peacefully tripping on ether.

I will probably get the results tomorrow or Friday. If the results of the biopsy are inconclusive -- get this -- we'll do the procedure again next week using a CT scan machine to guide the doctor in where to shoot the needle. The nodule appears more clearly on the CT scan than on the ultrasound.

Looking at the shadowy ultrasound printouts, I couldn't avoid the melancholy train of thought that this machine ought to be used for looking for babies, not for blobs of cancer.

Dr. Hoff had to leave town for urgent business so I cannot meet with him tomorrow. I may stick around to meet with Dr. Vauthey instead on Friday.

Saturday, June 26, 2004

Waiting it out in Houston

Christine and I decided to wait it out here in Houston. I can work remotely and the rest of the time, we'll just relax. I begin prep again Tuesday for a redo of the biopsy procedure on Wednesday.

I've been taking my blood pressure since Thursday and it has been normal, even a little high. Go figure. Seems that the pressure drop was indeed the combination of fluid loss and the medication.

Incidentally, with the fasting and prep on Wednesday, I lost six pounds in one day - eat your heart out Atkins devotees. (I've always said the cancer diet beats Atkins hands down... but I don't recommend it.)

Thursday, June 24, 2004

Procedure delayed

I went through the unpleasant preparation for the colonoscopy last night and woke early for my appointment and procedure. Everything was normal up to the point where they were about to wheel me in for the procedure. The problem was that my blood pressure was quite low - as low as I had ever seen it (top number in the 70s). The anesthesiologist would not go forward with sedation due to the risks. As the two perplexed doctors, intern, and a couple of nurses discussed the issue, my blood pressure refused to go up and even decreased a bit more. At one particular moment, they became quite concerned because they thought that the gastric varices (the swollen blood vessels around the stomach that we knew about) could be bleeding. This would have been very bad. Christine and I just held hands trying to decipher their jargon-filled discussion. I offered to the team that I could start worrying and maybe my blood pressure would rise. Not everyone smiled. I think everyone's blood pressure was elevated at that moment but mine! They concluded their discussion saying that the likely cause was loss of fluids due to the prep combined with the medication I'm taking for the varices. They hydrated me with IV fluids for a while and the pressure did rise somewhat, but not enough for them to go forward with the procedure. I was directed to go off the varices medication and stay nearby tonight and then could go home tomorrow if I want.

They rescheduled the procedure for next Wednesday. So, we'll just have to wait another week to find out what this nodule is. Christine and I haven't decided yet whether it would be best for us to drive back for the weekend or stay through until the test next week. I'll keep you updated.

I am concerned about this week's developments, but have found myself able to persevere pretty well this week. It has been great spending some solid time with Christine, and she is a great support to me. And I think often of the many of you who are sticking right there with me. Thanks.

Wednesday, June 23, 2004

biopsy tomorrow

I am at MD Anderson for tests this week and unfortunately, the CT scan Monday showed a growing nodule in my lower abdomen. The nodule is 1.4x1.2cm wide and may be cancerous. So they scheduled for tomorrow a colonoscopy/ultrasound/biopsy procedure where they'll investigate further. It is at 11a.m. and requires general anesthesia. I'll try to post how the procedure went later tomorrow. Biopsy results will not be available until late Friday. My doctor said to consider this a bump on the long road. It is not a common place for my type of cancer to spread, so he did not want to speculate as to what is going on there.

Sunday, May 30, 2004

One year mark

So what was this recent rise and fall of my CEA? Apparently, CEA can do that due to a lot of reasons and no one seems to understand or trust it that much when it bounces around at these levels. The important thing for now is that it went back down and is certainly not on a continued rise, which is when it does mean something. I am so deeply relieved that it went down. When the lab technician called me I made her spell it out about three times - "Four, as in four calling birds? Yes, four... F-O-U-R" I cannot describe the feeling of relief those letters gave me.

This week, I paid a visit to my Dallas oncologist, Dr. Perkins, who I hadn't seen in about a year. Dr. Perkins said if he were me, he would take Xeloda for at least for the rest of the year to do everything possible to kill off any microscopic cancer left in my body. (And he also indicated he wouldn't be off it right now). This makes me think Dr. Hoff will recommend I be put back on it when I visit him in Houston in a few weeks.

Dr. Hoff did not say much to me about the CEA or my treatment plan (he had his P.A. call me this week). The message there is just to enjoy the next few weeks and then go down to Houston to discuss where to go from here. The week of June 21 I'll be taking the CT scans, x-rays, a bone scan, and another CEA reading. Then I'll meet with my surgeon, Dr. Vauthey, and finally with Dr. Hoff.

All of this talk about CEA this week reminds me of the meanness of this disease. Less than 50% of people at my stage of treatment ultimately survive the disease. That is why the doctors want their patients to take chemo even when they don't feel anything wrong and when tumors can no longer be seen on the scans. On the other hand, this reminds me of how far I've come. A year ago yesterday I was diagnosed and it looked quite bleak. Step by step I made it through this year with you all at my side and with my God giving me strength. I am so deeply thankful even to be writing this today. My prayer is that he who sustained me will spare me from this disease.

I spoke with a friend this morning who was asking when I'll know that the cancer is not coming back. Depending upon who you ask, I hear that I can be pretty confident I am cured after 5 or 10 years. This cloud will be following me for a long time - I hope!

Thursday, May 20, 2004


jumpingdude.gif Just called the lab technician to get my CEA results from yesterday - 4.1! That's down again from three weeks ago and now is nearly normal (under 4.0 is considered normal). For those who don't know, when the CEA goes above normal it is a sign of impending recurrence of the cancer.

It is a baffling thing for my CEA to go down when I'm not on chemo. I'll speak with the doctor or his P.A. soon to find out what this could possibly mean, but I can guess that this has to be a good sign. Perhaps I'll be able to get back on the preventative chemo plan again after aborting it 6 weeks ago? I'll write more when I find out how to interpret all this and how this affects the treatment plan, but wanted to share some joy with everyone who has been so kind as to share my burdens.

Today is a sunny day for my soul.

Sunday, May 2, 2004

A "regressive" state

This week went quite well at MDACC. On the cancer recurrence issue, my CEA was down to 7.5 from the 9.5&10.0 it was three weeks earlier. (The 6.4 level in Dallas in between was measured on a different kind of machine, so they don't take it as a precise comparison) In addition, there is a liver enzyme level that also tends to be high with metastatic cancer in the liver and it was down this week for the first time since the surgery. CEA levels above 10.0 "almost always" indicate that a recurrence will show itself in something like 6-8 months. Levels between 5 and 10 can be due to other things besides cancer. In summary, Dr. Vauthey said that we indeed might not be seeing recurrence here. He is considering the disease right now as being in a regressive, rather than progressive, state. I'm liking the sound of that word - regressive. The PET scan matched the CT scan three weeks ago in revealing there are no measurable tumors in my body right now. After consulting with Dr. Hoff, they decided we would wait another three weeks before retesting the CEA and making treatment decisions. So no more chemo for now.

On the dilated veins, it was described to me in laymen's terms. There is an interstate vein going through the liver. It has a traffic jam on it, the cause of which they think is a clot from the surgery or healing process, and the blood is taking back roads to get to the heart. These back road veins are thus overcrowded and have expanded. This can be dangerous, but not at the level they are seeing in me. This was all confirmed by the endoscopy on Monday. By the way, that procedure caught me and Christine by surprise because there was significantly more risk than the other time I had this done. In the procedure, the doctor could accidentally pop one of these veins, causing all sorts of serious problems. We had to sign some extra release forms due to possibility of emergency surgery, receiving blood transfusion, etc. One form had a list of the possible side effects of the endoscopy. He was crossing out the lines with side effects that could not happen with this procedure. I asked him if he would cross out the line that said "death." We smiled at each other, but he did not cross it off. In the end, the procedure went very smoothly. Dr. Vauthey believes that we can address this vein problem with drugs and that the body figures out a way to heal itself by repairing and increasing the number of back road veins. He also said there was nearly no risk of that clot moving to the heart or brain. He told me that of all my problems right now, the vein thing in his mind was pretty far down the list now.

bluebonnet2.jpg We enjoyed our drive back, and with the extra time took the long way home to enjoy the blue bonnets that are in full bloom here in Texas right now. Only now as I write am I realizing the irony of taking the back roads back home.

Sunday, April 25, 2004

To Houston on a beautiful day

bguy.jpegToday is a gorgeous day. Sprinkled clouds float above in this crisp spring air. The Denton jazz festival is playing live on KNTU. The past three weeks I have felt as well as I have in a year. I've been getting back into the regular flow at work. I even got in a little golf last Friday. As I drive around doing errands before my trip, it is hard to believe that cancer even exists. But cancer likes to lurk in the dark and come back uninvited. Is it hiding or is it gone? It's voice gnaws on me in the back of my mind, causing me to wonder if this beautiful day is a calm before the storm. But what can I do? - I shall enjoy the day and the Lord who gave it to me. I pause, "Have mercy on me, Lord". Now let's turn up that jazz and hit the road.

We're off to Houston today for a round of tests and consultations with my doctors. Two big issues are to be addressed:

(1) The first is the possibility of cancer recurrence. My CEA test results this week in Dallas were down to 6.4 (it was at 10 three weeks ago). That report made my week. But it is still high (should be under 4) and thus they are still concerned it could be recurrence. Tomorrow morning I take a PET scan to expose any cancer that could be causing it to be high. They will also retake my CEA again.

(2) The second issue is that of these strangely dilated veins connected to my liver. My case was presented at a MDACC GI medical conference of all the experts (so my doctor tells me), and they still don't know what is causing this problem. It is not at an alarming state of dilation, but if they continue to grow, it could be life threatening. Interestingly, they now notice that back on my pre-surgery CT scan in December, these veins were slightly dilated. I'm not really sure what this means. To get a better idea of what is going on and what possible remedies they might pursue, I am having an endoscopy tomorrow after the PET scan. This is a procedure in which they put me under general anesthesia (a bit stronger than that of a colonoscopy, but not like surgery) and then stick some sort of diagnostic contraption down my throat. They say that from inside, they will be able to get a look at these veins.

Then on Wednesday morning I will meet with Dr. Vauthey, my liver surgeon, to discuss the findings of these tests and we'll discuss the approach from here. Dr. Hoff may be there for the Wednesday meeting, as well. I really have no idea what comes after Wednesday.

Sunday, April 11, 2004

O Death, Where is thy sting?

resurrection_sm.jpg Easter Day, 2004. Today the church celebrates the resurrection of Jesus. Belief in the resurrection is not an incidental belief of the church nor even one of several key beliefs. More than any other element of Christianity, it has been, from the first generation of Christians, the defining belief from which all other doctrines flow.

It might seem to be somewhat odd that someone with extensive education in the sciences would believe such an incredible event. Yet I, along with men and women across history, education levels, cultures, and ethnicities attest to its truthfulness - even unto death.

How can someone possibly believe this? Science discounts the possibility of bodily resurrection and common experience reveals that no one comes back after death. I like to preface my response by first highlighting a couple of thoughts. One is that the absurdity of this event is fully admitted by the New Testament. Ancient people were not more gullible in this area than we - everyone knows dead people don't come back to life. In fact, the very idea that no one ever comes back from the dead is the whole point of this belief - Christ's resurrection was cosmically and historically unique. Second, when we ask for scientific evidence for his resurrection, we are resting on Enlightenment presuppositions of empiricism and rationalism, both of which are unquestioned belief systems that rule out a priori any unique, unrepeatable, miraculous event. It's like demanding that a sunrise be proven with an audio tape recorder. The very rules of "proving" rule out belief of the event from the start.

Beyond these introductory remarks, I do not have the time or space here to discuss why I believe the resurrection. However, I would like to say that my security rests on it. Since the day I was first diagnosed with cancer, I have found that my world has been overturned. I race through thought after thought that seems to slip away through my fingers. I come to rest, however, when thinking about Christ and his resurrection. Finding solace is not the reason I believe, but the result of believing.

One of the leading Christian apologists in our age is N.T. Wright. ("Apologists" are scholars who defend the truthfulness of Christianity). He has gone to great lengths to make a solid case for resurrection in his book, Resurrection of the Son of God. This is a rather large dense book, but if you honestly want to wrestle with this issue, you would do yourself a favor to read him (instead of conveniently writing off your local TV preacher or some simple-minded Christian arguments you may have heard). A more brief treatment of the subject can be found in the chapter "The Challenge of Easter" in another of his books, The Challenge of Jesus.

The day after I was first diagnosed with cancer, I was pleased and surprised to hear an extended interview of Wright on our local NPR station. This was a bright light on a very dark day. I have a recording of the interview and you can listen to it thanks to the help of a friend who made it available on line.

Saturday, April 3, 2004

CT scans clear

I received news Friday that both my CT scans from this week are clear of evidence of tumors. This was relatively good news. The CT scan equipment can measure things reliably down to about a quarter of an inch. Thus, we ruled out anything big and vicious. So we can guess that the elevated CEA is either an early sign of some future recurrence or that the Xeloda is causing liver toxicity. We'll find out more in a few weeks when I retake the CEA.

Thursday, April 1, 2004

Trouble, mystery and irony

I just returned to Dallas tonight after a rough week in Houston. Wednesday's lab work showed a CEA a about the same level (10.0), so it is indeed elevated. To be sure, this was quite discouraging. I wrestled with whether to ask Christine to come down because I knew how hard it would be for her and figured she would come if I needed her. I decided to ask her Wednesday evening and she caught the last flight down to Houston that night to be with me in spite of her own pain. Waiting for her and meeting her late that night at Hobby Airport reminded me of our courting days, when we lived in different cities and spent what money we had on plane tickets - money that was worth it when we saw each other in the terminal. In between all the appointments and tests, we had a wonderful time together - talking, comforting each other, praying, reading Scripture, laughing. And it made the trip back to Dallas much more enjoyable (although I still had to look at Pillsbury Sam-boy). The week was rough on her physically, but I'm really glad she came.

We met with Dr. Vauthey and Dr. Hoff together Wednesday morning. They only had preliminary results from my liver/abdomen CT scan. They saw no evidence of tumors to explain the high CEA. But they gave the disclaimer that the radiologist is better at examining the scans and his report had not yet been written. While no cancer was apparent, they did notice that the veins around my spleen were quite enlarged. Both Dr. Hoff and Dr. Vauthey were very perplexed by this and said they had not seen anything like it before. (One friend told me later in response, "see what a special guy you are, Greg!") Every week there is some sort of MDACC oncologist conference in which they participate, and on April 14th the conference will have some outside "experts" attending. So Dr. Vauthey decided they will discuss my case at the conference on that day to determine how to further investigate this blood vessel mystery.

Meanwhile, my doctors called for two things as a result of these findings. One, they had me take a CT scan Wednesday night of my lungs to see if anything evil is going on there. The official results of this and Tuesday's scan should be ready Friday. Two, they told me to stop the chemo. There is some chance that the Xeloda can cause some elevation of the CEA due to liver toxicity. So after three weeks of no Xeloda, we'll retake the CEA. If the number is down - terrific. If not, and if this is a recurrence of cancer, then the Xeloda is not working anyway so it is not useful to be taking it. They wouldn't really address any what-if's because there are too many uncertainties right now. So we wait.

The short term positive of all this is that for the first time in almost a year, I will be off chemo and not recovering from some major surgery. I'll probably appear and feel as healthy as I have in a long time. Such is the irony of cancer.

Monday, March 29, 2004

Possible troubling news

I am back in Houston for tests and visits with Dr. Hoff and my liver surgeon, Dr. Vauthey. Today was supposed to be an uneventful visit with Dr. Hoff, who is monitoring my health during the chemotherapy. However, my CEA level, which is the blood marker that shows cancerous activity, was up significantly. It has been in the 3�s and 4�s since it first came down when I started chemo last summer. Today, it was 9.5. Dr. Hoff was perplexed by this, and said he would not have expected it at this time. He asked me some questions about what I had eaten before the blood was taken and said he wanted to retest, as this could be a fluke. He seemed concerned, but didn�t want to conclude anything until we retest. To say that I hope that it is a fluke would be a huge understatement.

Tomorrow, then, I will redo the blood work and will get a CT scan as originally planned. Dr. Vauthey ordered the CT Scan � it has been three months (plus some) since the surgery and he wants to examine how the liver is doing. I will try to find out what the blood work result is tomorrow afternoon, but will find out for sure on Wednesday morning with my appointment with Dr. Vauthey.

Unfortunately, Christine is not with me. Her health was particularly bad this weekend and we decided it was best if she rested this week instead of trekking to Houston. We really hoped this would be an uneventful week.

By faith, I have accepted my remarkable progress thus far as the Lord hearing the cries of his people on my behalf. Please continue to pray that I will remain free from this disease and that the tests tomorrow show me clean of cancer.

Saturday, March 20, 2004

Visit from Sarah, Margus, and Mati

C_G_Terillis_sm.jpg Margus_Sarah_Terillis_sm.jpg Mati_bench_sm.jpg

Last weekend we enjoed a visit from Christine's sister, Sarah, and her husband, Margus, and little 20-month old Mati. We had a good, if short, time together. We had not seen them in quite some time because of our surgery-altered Christmas plans. Mati is such fun. He really liked the pigs and ducks at Spring Creek Farm. Here we are enjoying dinner and jazz at Terilli's. Mati was home asleep with a sitter. We didn't think he'd be in the mood for the night out. You can view the album here.

Meanwhile, I'm recovering very well from the surgery. I haven't had any significant pain for a couple weeks now. I began another round of chemo this week. It is beginning to wear on me somewhat - sort of a low-grade sickness and fatigue. The best thing for this seems to be sleep.

Monday, March 1, 2004

A bicycle ride

It has been a while since I have written. I have been fighting a cold of some sort, and now Christine has caught it. The chemotherapy is tolerable although the "yuck" symptoms are beginning to occur. I am able to do some normal things, albeit with limited strength and as long as I take lots of naps. I can definitely do this for a few more months. It is good to think that this may be all I have to endure of this treatment.

I must tell you about my first bicycle ride after nearly a year. A couple of weeks ago, I got a strong urge to ride my bicycle. This was odd, for it was about 40 degrees and drizzling outside. Nevertheless, I had an unexpected burst of adrenaline that demanded to get back on that bike.

I pumped the tires back up - they had gone completely flat. I wondered if all the requisite parts of my body would coordinate properly to ride. As I left the garage and got as far as the next door neighbor's driveway, I came to my senses and marveled at my own stupidity. Had I forgotten that I was on chemotherapy? Had it slipped my mind that my abdominal wall was sliced several directions and filled with scar tissue? The rain was so cold as it hit my face. I turned around, wondering what ill-conceived idea had gotten into my head. But as suddenly as I turned around, the urge to press on returned and I turned around once more. I'm going to ride this bike no matter what, I resolved. This brand new liver needed a test-drive.

My leg began burning - the kind of feeling that I would not have experienced in the past until after miles of cycling. I pressed against the wind and rain for about a half-block when an unexpected joy came over me. I could not stop thinking about how two months earlier I was lying in ICU in great pain wondering how I could muster the strength to exist through each creeping minute ahead of me. How far I had come! I rejoiced as I pedaled. How far I had come! My life had hung on edge just months ago and here I was riding my bicycle in ridiculous conditions. I laughed to myself. I thanked my Creator. "Let all who take refuge in you be glad; let them ever sing for joy." I continued to press on. Am I free from disease, or am I in a break during a losing battle? At this moment, who cares? I'm riding my bike in the rain! How odd it was that this could be an enjoyable experience. In all, the trip lasted a block. But it was indeed my most enjoyable bike ride. The rain on my face was exhilarating. Am I mad? I came back wet and freezing, but in a great mood.

Joy, it seems, sometimes depends upon which side of suffering we live.

Friday, February 20, 2004

My birthday

I turned 36 yesterday. When we talk about someone having a "good" birthday, we usually mean something like a day of fun or a particularly good day at work, or a day with a fun event with one's family. Yesterday was indeed a "good birthday", but not in the usual sense of the term.

I spent most of the day by myself at MD Anderson meeting with doctors, nurses, and genetic research interviewers. Then I made the 250-mile drive up I-45 back to Dallas alone. This is the same dull drive I have made countless times, especially during my college years. The visual highlights of this stretch of Texas highway are limited to a few scenic oak groves, some billboards for Bubba's Bar-B-Q of Ennis ("serious barbeque"), Huntsville State Penitentiary, and a ridiculously huge (even by Texas standards) white statue of Sam Houston overlooking the roadway. Incidentally, in my mind, this jolly monstrosity does little justice to that great man because the statue looks too much like the giant Pillsbury Dough Boy from Ghostbusters.

In any case, I had a delightful day. I had some CDs and a book-on-tape but found myself opting instead to sit in silence. Among other things, I contemplated 36. I kept recalling a small private thought I had in the early days after diagnosis last summer. During those dark days, when looking at data showing a median life expectancy of something like seven months, I wondered if I would see 36. And here I was, driving down this same ol' road on that very day. 36 had indeed come. The tumors were gone. The doctors were more optimistic than usual, and overall, I didn't feel too sick. (although the Sonic burger was still stubbornly resisting digestion -- Sonic is still the height of cuisine on I-45).

To be sure, the dough-boy statue was still ridiculous and the penitentiary still loomed. But the Bubba's signs were a bit more humorous. It also seemed like there were more oak groves. And they were more beautiful than I had noticed before. The air seemed fresher, as well. So if anyone asks... yes, I did have a good birthday.


Tuesday, February 17, 2004

Brenham bed & breakfast & dogs


Here are some pictures of our weekend get-away to Brenham, TX (1/31-2/2). We stayed there the final few days for a break after surgery recovery and before I began this last round of chemotherapy.

Christine, of course, will remember it for the many dogs...

This fella, who was in charge of the bulding next door, wanted to come out to meet us.
Christine especially liked the Cocker Spaniels, who lived in a kennel on the property. They woke us every morning barking (nothing like the sound of a dozen Cockers at 7am), but she didn't mind - dogs are always given grace in our world.



Monday, February 16, 2004

Finished round six

This morning I took the last of my Xeloda chemo for this round, completing round six. I'm not what you would call productive these days, so I consider completion of a round of drugs to be a major accomplishment.

I am now at a point of only being mildly sick and my strength from surgery is still steadily gaining. I will be in Houston meeting with Dr. Hoff and Dr. Rodriguez-Bigas on Thursday. There will be some minor tests, but this should be an uneventful trip. The next round of chemo will begin next Monday, assuming all goes well during my evaluation Thursday.

Christine continues to struggle with a bad season of migraines, so she will remain home.

Sunday, February 15, 2004

Fallen Snow

Backyard.jpgDolce.jpgWe awoke yesterday to a pleasant surprise. I extend apologies to my friends of the Northeast, where I hear snow and ice has been an unrelenting challenge this season. Down here, we delight in it and take our mandatory out-the-window photos, as if to prove to ourselves it wasn't a dream. After all, as was the case yesterday, it is usually mostly gone by the end of the day.

We cancer patients are understandably drawn to read Job. Here are some words from Job 37 that yesterday brought to mind...
God's voice thunders in marvelous ways; he does great things beyond our understanding. He says to the snow, 'Fall on the earth,' and to the rain shower, 'Be a mighty downpour.' So that all men he has made may know his work, he stops every man from his labor. - Job 37:5-7

Thursday, February 12, 2004

Tuesday, February 10, 2004

Thank you Dr. Heiderberger

In 1957, Dr. Charles Heiderberger discovered 5-flourouracil, otherwise known as "5-FU", at the University of Wisconsin. This drug remains today as the most effective chemotherapy for use against colorectal cancer. Xeloda, which I am taking now, is the oral form of 5-fu. The poem below reflects some of my own thoughts about 5-fu, which I use here to represent all chemo I have had to take. (Because I am now only taking Xeloda, I am expecting the full force of the symptoms below will not appear. But this still reflects how I feel about chemo)


Having met Sir C-name,
I'll never be the same.
For he forced me into a battle
I call the chemo game.

A conspiring of radiology with cohort oncology
And - who knows - microbiology
Employing a well-intentioned dimented psychology
Turned loose a rabid shrew
I never before knew
My body was attacked by 5-fu.

"For my own good" everyone else understood.
The mean lifetime increases a year or two
If I'd be a good boy
And take my 5-fu.

Hamburger tastes like a rotting yak
Intestinal revolt
Gastronomic attack.
Developing a gut-wrenching gurgling lump
The posture curling into a slump
Schlop and glop from the rump
(I'm sorry to use the terms I do
But I'm left with no choice by 5-fu)
Gagging, cringing. What's a good boy to do?
Paste on a smile and take more 5-fu.

I do not want it in a box.
I do not want it with a fox.
I do not, do not in a tree.
Not in a car, you let me be!
Not with a pig or kangaroo
I do not want my 5-fu.

Tumor retractibility? 5-fu.
Metastatic possibility? 5-fu.
Microscopic activity? 5-fu.
Perhaps curability? 5-fu.
Even longevity? 5-fu.

He who works under, behind and through
Ordinary means like 5-fu
Is free
O so free.
Dimly I yet see
The author of life and of 5-fu
Guarantor of peace making all things new
And ridding the world of 5-fu.

Wednesday, February 4, 2004

Brain MRI result

scarecrow.bmp I would while away the hours
Conferin' with the flowers
Consultin' with the rain
And my head I'd be scratchin'
While my thoughts were busy hatchin'
If I only had a brain.

Some very good news... I got the call today from my doctor's assistant about the MRI result. She said, "Yes, they did find a brain... and yes, it is clear." It's good to know both! Thus, the recent headaches are not due to any cancer, which was my and the doctor's concern. As you might imagine, I was quite concerned about this, and am so relieved and thankful. joy.

Tuesday, February 3, 2004

In Dallas, facing new decision

We arrived yesterday back in Dallas after a terrific weekend at a remote bed & breakfast near Brenham. This was a refreshing break for both of us. No telephone (or internet) connection kept us confortably secluded. We especially enjoyed the many ranch dogs, who kept things under control on the property.

Back on the medical front, we are facing a difficult decision for future treatment. Because there aren't any studies on what to do at this point (Dr. Hoff says any plan now is sort of a shot in the dark), no decision is easy. The desire is to avoid recurrence, which is not uncommon with my type of cancer. He recommends that I continue taking the Xeloda oral chemotherapy for three to four months. I started it yesterday (and accordingly have begun once again updating my home page chemo tracker). This stuff isn't as bad as the irinotecan I took intravenously with Xeloda in the past. The irinotecan is only effective for shrinking tumors (not avoiding recurrence), so I won't be taking that.

The question then, is whether to take a relatively new drug, oxalyplatin, alongside the Xeloda. There are several reasons why I should not. (1) It is proved to be only marginally effective (around 4% higher survival rate) for people who have earlier stages of this cancer (not yet reaching the liver). In my case, it is not even known if it would have the same advantage. (2) It is nasty stuff, likely causing worse side effects than any of the drugs I have taken in my current treatment, and my body has been through a lot. Some of the side effects, like losing touch sensation at the fingertips, could be permanent. (3) The drug is related to cisplatin, to which I had a moderate allergic reaction back when I had bone cancer as a child. Since oxalyplatin tends to cause more frequent and severe allergic reactions in patients than cisplatin, there is risk of a dangerous allergic reaction. (4) I would have to take reduced amounts of it at least initially because of my liver, which is not at full power.

In my mind, weighing against all of this is the philosophy to do everything possible to insure the cancer will not come back.

For this first round, I am only taking Xeloda, bacause I am weak and I wouldn't be able to take much oxalyplatin anyway until my liver comes back to full strength. Dr. Hoff thinks this is the way to go. As for whether I will take the oxalyplatin in the future, right now I am seeking the advice of my various doctors and am joining with Christine in asking for wisdom from the Lord. Asking for wisdom is part of the process of Christian perseverance, (for which I am in deep need), as illustrated by this passage from James:

Consider it pure joy, my brothers, whenever you face trials of many kinds, because you know that the testing of your faith develops perseverance. Perseverance must finish its work so that you may be mature and complete, not lacking anything. If any of you lacks wisdom, he should ask God, who gives generously to all without finding fault, and it will be given to him. But when he asks, he must believe and not doubt, because he who doubts is like a wave of the sea, blown and tossed by the wind. That man should not think he will receive anything from the Lord. James 1:2-7

Finally, I did have a brain MRI last Thursday to rule out metastatic activity as the cause of my recent headaches. It takes a couple days to get the radiology report and I have not yet heard the result.

Wednesday, January 28, 2004

Speaking of pioneers

Speaking of pioneers, I have to admit the recent Mars probe landings have captured my interest. But I really got excited when I saw this early image sent back from the NASA rover. Any rumors concerning the whereabouts of the Illudium Q-36 Explosive Space Modulator?

Monday, January 26, 2004

Houston trip postponed for MRI

I am not meeting with Dr. Hoff today to discuss my future treatment. He decided to postpone it until Thursday to coincide with a brain MRI that I need to get done. I have unfortunately had several headaches in the past few weeks, and I do not tend to get headaches. Because one of the places that this cancer can spread is the brain, and because headaches can be an indicating symptom for new cancer, he wanted to get the scan. However, he does not think that it is likely going to show cancer - he just wants to play it on the safe side.

After a full day headache five days ago, during which I must say that I was plagued with the unpleasant thought of its cause, Christine and I came to realize that since the surgery, I have often been sleeping on my stomach with head turned sharply. This is not normal for me - I just do it because of discomfort at the surgery site and difficulty sleeping. Since then, I stopped sleeping this way and have not had any more headaches. To say I hope this was the cause is a great understatement.

So, Thursday I have a brain MRI and meet with him to discuss my future treatment plan. Here's the interesting part... there are no studies that tell us what to do at this point. There is no data showing what protocol increases the chances of the cancer not returning for a patient like me. The main reason is that there haven't been enough cases of stage IV colon cancer (with all tumors successfully removed) to justify a full study. This causes me to have a deep humbled thankfulness. The problem I now have is a relatively good problem to have. I will likely continue taking Xeloda, but we need to decide how agressive to be with other possible drugs. I will no longer take the intravenous drug I have been taking in the past (Irinotecan) because it only works for shrinking tumors - not for killing the microscopic stuff and preventing recurrence. The decision on where to go from here, Dr. Hoff's PA said, will be made with Christine's and my input and belongs in the end to us. That's a lot of weight to bear. We're non-volunteer pioneers.

You, O Lord, keep my lamp burning;
My God turns my darkness into light.
- Psalm 18:28

Monday, January 19, 2004

MLK's apple tree

martin luther king crop.jpgEven if I knew that tomorrow the world would go to pieces, I would still plant my apple tree.

On this day of remembrance of Martin Luther King Jr, I am mindful of this quote of his that I have thought of often during my bout with cancer. I do not know the days of my life ahead, but that cannot keep me from continuing work today. To me, this quote wrestles with the notion that all we do is in vain considering none of us (nor the memory of us) will be here in just a few decades from now. Meaning to life must thus be located somewhere other than merely in ourselves or our daily work. My friend, Bob Bagwell, who is in remission from brain cancer told me about his feeling somewhat odd in planting a tree orchard on his farm recently, given what doctors say are his chances of being around to see the trees grown. But he went ahead with the plan. Cancer seems only to accentuate the conviction that I share with Bob - that meaning is only found with the recognition that life is lived Coram Deo, in the presence of God. With this acknowledgment, we can confidently be creative and work today although tomorrow we may die. The Apostle Paul put it this way, "Whatever you do, work at it with all your heart, as working for the Lord, not for men... It is the Lord Christ you are serving." Col 3:23-24

[Incidentally, there is some controversy as to the origin of this quote. Legend actually has Martin Luther saying this. But there is no written record of the reformer speaking these words. Apparently, the first written evidence of this saying comes from 1944 by a priest named Karl Lotz. In any case, it was MLK Jr who popularized the quote. I was introduced to the quote by my close friend, Rev. Mike Ernst, who told me of it when we first spoke of my cancer.]

Sunday, January 18, 2004

Happy Birthday Dad

I round off the birthday week by wishing my Dad Happy Birthday!

(He's the kid on the left)

He's currently an architect in Dallas. You can check out some of his work here.


Friday, January 16, 2004

Do you know this woman?


All I know is that I'm glad she's in my gang! Happy Birthday, Mom!

Thursday, January 15, 2004

Happy Birthday Carl


Today is the birthday of Carl Mantegna, my father-in-law. Happy birthday, Carl!

(this is birthday week for my family; more to come...)

Back home

But I at last with weary feet
Will turn towards the lighted inn,
My evening-rest and sleep to meet.

- Tolkein, Lord of the Rings


I feel as though I have reluctantly, yet willingly, completed a successful journey. Or at least a significant portion of the journey. Tuesday night I reclined in my own bed and slept well for the first time in nearly a month. Lyn Ragan's sister Anne and her husband Tim drove us back to Dallas on Tuesday evening. We enjoyed getting to know them and are greatful for the generous help in escorting us back home.

Pictured here are me and Dad having coffee and dessert last night. (The beard is a result of not getting around to shaving since the surgery!)

I am still quite weak and Christine still has her cold. But we are so very glad to be back in Dallas. Christine was so excited to be home Tuesday night that she actually had difficulty sleeping! My recovery will continue until the 26th, when I must return to Houston to likely begin chemo.

Incidentally, does anyone in the North Dallas area have a recommendation for a physical therapist? My doctor suggested I go to one to help regain my abdominal muscle function after these surgeries. Please email me directly if you have someone to recommend.

Sunday, January 11, 2004

Steadily gaining strength

My strength is gradually improving each day. On Thursday, we spoke with Dr. Vauthey's PA, Steve Wei, and they decided that I did not need to come in on Friday and that I could go back to Dallas anytime after this weekend. We are currently planning on driving back with some friends on Tuesday. I am so ready for my own house, my own bed, my own chair, my own dog. We left in a hurry before Christmas and it is hard to imagine that time. The surgery and recovery have made Dallas seem like the distant past.

Christine has come down with a virus of some sort. We just can't seem to get ahead these days! We are discouraged at the situation and hope that this does not get severe or last long.

Every day, I have been trying to do something to get myself out of the house. Thursday night, my friend, Pat Roach, took me to see my alma mater, Rice, play basketball. Pat and I met while we were both attending Westminster Seminary. Pat serves in a college ministry serving Rice students through Christ the King Church. Saturday afternoon I went to see another game with Nils and his son Matias. Rice is looking pretty tough this year. They are 11-3 with two of their losses being rather close calls to #1 U-Conn and #4 Stanford. Go Owls! Today I went to church and enjoyed worshipping with the Rasmussens and Sarah Shay. The past few weeks have given me much for which I am thankful.

After any outing, I come home and crash. Right now, I'd say I have about 3-4 hours of energy in me every day. The liver is regenerating fast, based on what they know about how it heals. Steve Wei told me that my blood counts confirm strong growth of the liver. I should be back to full strength by the end of February.

That is, other than the fact that I will begin chemotherapy soon. My next appointment, during which I will likely begin another round of chemo, is January 26 - only two weeks away. That soon?! They don't mess around with cancer at MD Anderson. I suppose that's fine by me.

Thursday, January 8, 2004

Update - better the last couple days

I began emerging from the pit yesterday with some more strength. Today I don't feel quite as strong as yesterday, but I am so glad not to be where I was the first half of this week. They told me there would be good days and bad - I hope the worst are behind me. I am far from full strength, but it is good to feel alive again.

The test results showed I do have a recurrence of c-diff bacteria, which should pass in a matter of days. So really two things are going on - the bacteria (digestive problems) and the typical liver resection recovery (fatigue, pain). Today, we hear from the doctor as to whether I need to return tomorrow to meet him. Also, we should find out if I can travel back to Dallas soon.

Tuesday, January 6, 2004


This recovery is grueling. They said at some point I would begin to experience "extreme fatigue" as part of the liver regeneration process. I now know what they were talking about. I often cannot even raise myself to watch television or read. And yet, sleep is extremely difficult to come by. Both of us have slept very little in the past three days, which included one night at the ER. No word yet on results whether I have additional problems than simply being someone who just lost three-quarters of his liver. They say this fatigue could last a month or two. Oh, that the days would zoom by faster. As it is, each minute just creeps by. Lord, have mercy.

Monday, January 5, 2004

There And Back Again

Greg did, in fact, end up visiting the hospital last night to address his high temperature. The current thought is that he has the same bacterial infection that sidelined him in late November, but they won't know for a few days. Greg was released this morning and he and Christine are back resting at the Ragans' house.

Please pray that:

The doctors would identify the problem and treat it quickly.
Greg would continue to heal and his pain would subside.
Greg and Christine would be able to come back to Dallas soon.
After a long night without sleep both Greg and Christine would be able to rest today and tonight, and that Christine in particular would not feel the effects on her body in terms of fibromyalgia and migraines.

Also, please refrain from calling the cellphone for the rest of the day so they can get some rest.

Sunday, January 4, 2004

No Hospital Trip ... Yet

I just spoke with Christine; so far Greg has been able to hold down fluids, though he is still in a lot of pain and has pretty strong nausea. Please continue to pray that he can get the nausea under control and begin taking pain medicine, and be able to rest.

Prayer Request

Last night Greg hardly slept at all, as his stomach was bothering him greatly. This morning his stomach forcibly emptied its contents, which included his most recent dose of pain medication. Right now he is in a lot of pain and hoping his stomach will settle down so that he can keep down fluids and take his pain medication again. If not, he will need to go to the hospital in a few hours (presumably to get on an IV for medicine and rehydration).

Please pray that Greg would feel better, that he would be able to hold down liquids, and that he would not need to go to the hospital this afternoon.

Friday, January 2, 2004

It came anyway

And the Grinch, with his grinch-feet ice-cold in the snow, grinch2.jpg
Stood puzzling and puzzling: "How could it be so?"
"It came without ribbons! It came without tags!"
"It came without packages, boxes or bags!"

And he puzzled three hours, till his puzzler was sore.
Then the Grinch thought of something he hadn't before!
"Maybe Christmas," he thought, "doesn't come from a store."
"Maybe Christmas...perhaps...means a little bit more!"

Don�t tell anyone at church that I�m drawing spiritual material from How the Grinch Stole Christmas, but I found my experience last week to fit these words well. My family and I experienced a Christmas stripped of the tags, and the tinsel, the trimmings, and the trappings. �But somehow or other, Christmas came just the same�.

It came in power, I believe, because we had nothing left to grasp but a story about God coming to man in the flesh to suffer on our behalf. And as God loved us through Jesus, so too, we loved one another. The Murrays told me it was their best Christmas ever. I must agree.

Oh, and the bonus on this wonderful Christmas was that they opened me up and found no cancer beyond that which they took out. My feelings about this are multitude: elation, humility, wonder, fear, thankfulness, and apprehension of what�s next. The trite words put it well: this was my best Christmas present ever.

This is my first journey back on the internet since Christmas Eve. The reason for my absence from the Web until now is that I have been sapped of all energy. I could go into the many details of what has been happening, but will have to table that until later. So, I�ll sum up: There have been many small complications, yet each matched with a small victory. Pain and discomfort are gradually being replaced by relief.

On the 31st, I was discharged and we moved into a house owned by our friends, Lyn and Glen Ragan. It belonged to her mother, who passed away recently. They�ve generously opened it up to us for a week or two until I am fit enough to travel back to Dallas.

Today, we met with Dr. Vauthey down at the hospital. Things are going very well in his estimation. One item of interest is that the pathology report showed two cancerous nodes in the liver that had grown into each other (as opposed to a single node as we originally thought). However, the surgery provided a reasonable margin around the entire cancerous region. With this good report, they took out the 47-staple zipper across my body and then sent me home.

I�m getting a little better each day. I haven�t yet been able to sleep through the night due to pain and discomfort, but the nights are getting better. Also, I am now able to get around without the walker.

Looks like we made it through the surgery battle. Now we can focus on recovering and fortifying for whatever�s next in this war.