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

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.

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...

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.

Our 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.

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.

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.

Lisl

Christine 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

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:

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

Ball parks
Candlestick
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
Wrigley
Astrodome
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.

We 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.