Middle of third round

I haven't written since the good news, so here's a little update. I took the intravenous chemo Friday evening. It caused some gastronomical discomfort the following day, but my brother-in-law, Michael, was with me to distract with video games, chess, and baseball. During the chemo infusion I was doing pretty well against him in chess, but then the Zofran kicked in so I'm using that as an excuse for my strategic collapse. Saturday night, we went to see the Astros at the new Minute Maid Park... caught the last two innings... I wasn't moving too fast that day. The tickets were complements of some friends from Rice - Tyler and Ruth Reitmeier. Ruth has come down to the hospital to help out a couple times and I stayed at their house before the chemo. Another friend from Rice, Glen Ragan, came down to stay with me Sunday night at the hotel, because Michael flew back to Philadelphia Sunday.

Monday I felt OK to drive back to Dallas. Since then, I've been continuing the oral stuff twice a day, praying that it will continue to eat away the cancer. I'm feeling more intestinal and stomach discomfort than previous rounds, but still nothing major enough to hold off the chemo. But enough to keep me working quietly at home these days.

Today is a blood drive at my TI site. A friend from work, Darren McCosky, encouraged those giving to donate in my name, which I appreciated. Blood supply is scarce these days, so all this support is helping the community as well as me.

Christine is still not feeling too well. We take care of each other as we can. Thank you for your prayers.

"Incredible"

I met this morning with Dr. Hoff and his crew to find out for the first time how the chemo is doing. The verdict is - the tumors are responding very well!


The doctor and the P.A. were using words like "incredible" and "remarkable" to describe how much the tumors had shrunk... and after just two rounds. As you recall, there was a 50-50 chance that the chemo would even work - and for me, it is working "so well", in Dr. Hoff's words. Both the primary tumor and the liver tumor have shrunk to almost half the size that they were just 6 weeks ago. The liver tumor reduced from 19x12cm to 12x10 and the colon tumor reduced from 6x4 to 3x2.5. As I looked at the scans it was indeed hard to believe just how much change can occur in the body in such short time. In addition, the entire liver had reduced back to a more normal size and it is functioning better as evidenced by the blood work. The lymph nodes looked less swolen (they are possibly cancerous) and the two small lung spots are no longer visible. The good news about the lung is that the spots are gone; the bad news is that they probably were cancer and not something else. Finally, the CEA blood marker, which was 123 the day before the first round and 14 the day before the second was 4.3 on Monday - almost normal level!
While the liver tumor has reduced consdierably, it is still not small enough to be operable, according to Dr. Hoff. But he is hopeful that the trend will continue and we will be ready for surgery after a few more rounds. "We need it to shrink just a little more," he said. It is good that I have tolerated the chemo well, so that we can continue full dosage. So the plan is to take three more rounds (9 weeks). Then if all goes well, we'll likely go to surgery to cut out all the bad stuff.
So once again I find myself in the odd position of being happy to take chemo. Tomorrow afternoon at 4:00 I take the intravenous goop and tomorrow night I begin the oral goop.
The road is long but it seems we're starting strong. I think it's like scoring three runs in the top of the first inning - there's still eight more innings, but it is a great start.
Meanwhile, Christine's migraines have been relentless and severe. As a result, she did not come down to Houston with me. This was very disappointing for both of us. My brother-in-law, Michael Murray, is flying down from Philadelphia this evening to care for me during the chemo and days after (and to play endless chess with me!)
There is more to share, but I'll leave it at the bottom line good news for now. For those praying, my request is that you please continue! Join with me in thanking the Lord for these results and pray for continued response to chemo, continued toleration of chemo in terms of side effects, and complete healing. Also, please remember Christine in your prayers.
The same words of Isaiah remain as our motto. Christine reminded me of these words late last night as we spoke on the phone and discussed my anxiety about today's appointment: "You will keep in perfect peace him whose mind is steadfast, because he trusts in You." (Isaiah 26:3)

Second round complete

Friday morning I finished my second round of chemo. The proper way to celebrate such an occasion in Texas is to stand on the nearest table, lift yer hat to the sky and declare, "yipee-aye-ay!" I never really fit the Texas mold. I took my wife out to dinner instead.

I am thankful that this round was better than the last. I was even able to work throughout this round and make some good progress on projects at work. My body's response is remarkable because the effects are expected to get worse over time. I'm a bit physically beat right now, but am glad to have a rest week from chemo.

Tomorrow morning we are headed to Houston. Christine is not feeling well, so we postponed driving until tomorrow morning. Monday afternoon and evening I have a series of diagnostic imaging tests that will determine if the chemo is working. They're going to go looking for more trouble and I hope they fail this time! Thursday we meet with Dr. Hoff to find out the results and chart the next steps. If the chemo is indeed working well, we will continue the current protocol and I will receive the intravenous irinotecan on Friday. If not, surgery and/or a different chemo protocol may be the best next step.

Thank you for your prayers.

Change in instructions for blood donation

Apparently, MDACC did a poor job of telling us what was needed to properly credit my account if you give blood. The info you need is in the following file: Blood_info.doc

Date of birth is supposed to suffice instead of SS#, which I would rather not post.

I updated this in the original post.

How to give blood

There is a good chance I may need blood transfusions in the future, either due to chemotherapy effects or as part of the colon/liver surgery. If you are able to give blood, there is a way you can donate and credit it to my account from where you live. Blood supplies in general are critically low in many areas right now, so you will be helping me as well as those in your community who are in need of blood.




You must donate to a member of the American Association of Blood Banks. You can find the nearest center to you by going to the AABB web site. Notice that the database is specific about the city. For example, Richardson is listed as well as Dallas.
The following file has information that must be presented for me to be the beneficiary: Blood_info.doc
Date of birth is supposed to suffice instead of SS#, which I would rather not post. If actually give at MDACC, you will want my patient ID, which is 169996.
You do not have to have my particular blood type. The credit, not the actual blood, will be transferred to my account so that I might receive blood of my type donated in Houston.
[ADDED NOTE on 02/13/04]: Blood supply is typically low, so giving is always needed in the community. However, after my surgery on 12/22, I am personally no longer in need of blood - thanks.]

No vacation with cancer

Well, unlike what I told you in an earlier post, it turns out that we will have to cancel ... er, I should say postpone... our tenth anniversary trip we had planned to go to Yellowstone and the Grand Tetons. Here is the cabin we were going to stay in part of the time. It was a ten day trip scheduled for late August and we had been looking forward to it since February. But to tell you the truth, we are more looking forward to getting rid of the cancer. Dr. Hoff said that with potential emergency surgery and chemo side effects, the last place I need to be is Montana. Meanwhile, we're working on a consolation vacation. Something closer by time to MDACC and for not as long. Ideas?

I went to a "dealing with chemotherapy side effects" class while at MDACC last week. One eager woman sitting up front was wearing a hawaiian shirt and a hot pink hat with a button on it that said "cancer sucks". It got a chuckle out of me.

The movement

I really hate to talk about the bowel movement, but this story needs to be told...

After the colonoscopy and barium enima last Tuesday, nothing had been heard from my digestive system. Food went in, nothing came out. The low fiber diet was probably a cause, as was the fact that these tests required the complete emptying of my system. By yesterday, my doctor became quite concerned, as did I. After all, the biggest fear right now is obstruction, which is dangerous while on chemo. It was getting scary.
The good news is that this morning, my system showed itself once again to be working. Now many of you know that parenting is the only other occasion where one might exclaim joy at the occasion of a bowel movement. To be silly, Christine called up her father, who was concerned with us at the dangerous situation, and exclaimed on the voice mail, "G-pa, Greggy made a poopy this morning!" She became horrified with embarrasment when she realized that she had just left that message at the wrong number. She laughed as hard as she ever has.
Perhaps some stranger out there is rejoicing with us.

Low residue diet details

For those who are generously making meals for us, the file below has the details of the diet I am now on. Generally, it is heavy on meat, light on breads and veggies, no whole grain or seeds. Where possible, please keep in mind Christine, who should be eating fiber - I don't have to eat everything prepared. Thanks for your service to us.

Click to download file: LowResidueDiet.doc

Two hearts

Christine snuggled up to me on the hospital bed as we awaited the chemo bag to be emptied and we prayed. Her love sustains me. Late last night, I wrote this...

Two hearts broken
Curled together on the chemo bed
Nothing to hold but each other.
The poison to drip
Man versus demon
Oh, but that the serum
Would as ruthless be
As the silent alien inside.
We pray.
Jesus weeps.
We wait,
Daring to hope.
Christine and I.

Chemo went well

Just a quick update...Yesterday evening I tolerated the chemo very well.



I had to get a rush x-ray first to make sure the port-o-cath was in the right place, as this was the first time I would use it. The port-o-cath is the permanent I.V. that they imlpanted in my chest. I could not believe how quickly they got the x-ray - possibly the fastest things ever moved here. And a good thing, because a delay would have meant chemo today instead, for it was the end of the day.
They kept a close eye on me for two hours for serious side effects - and nothing! Just some sweating and nausea, but nothing to keep us from moving on full speed, as we need to do in the long run. I stayed up pretty late - probably a combo of the chemo and the fact I had many things I wanted to think through. Many of you know - I do nights. I also watched one of the Ken Burns Civil War episodes - it's amazing what a different world it was just 140 years ago. I find it very challenging to get in the minds of the people fighting and leading that war.
We'll stay here close to MDACC until Monday. Thanks for your prayers. I am attributing my good response to prayer. This chemo is supposed to get worse over time. This time was clearly better than last.

First meeting with Hoff

Yesterday, I had my first meeting with my new clinical oncologist, Dr. Hoff.


We decided that we were not comfortable working with Dr. Xiong and his team and were able to switch to Dr. Hoff, who had moved back to MDACC last week after being out of the country due to visa problems. Incidentally, Dr. Hoff is the leading researcher who discovered that the oral chemo I am now taking, Xeloda, is just as effective as its intravenous alternative, 5-FU, which causes worse side effects. Ironically, his work is why I am taking the regimen that I am.
We had very good meetings with his nurse, his P.A., a nutritionist, and with the "Pharm-D" (the pharmaceutical PhD member of his team). I have great confidence in him and the team he has assembled. Dr. Hoff reiterated in a clear manner the gamble we are currently being forced to take. The decision from the beginning is chemo first or surgery first. He indicated neither is obviously better, which is why there seems to be confusion from doctor to doctor. Chemo first is better if it works, which is 50-50. If it does not, it would have been much better to do surgery first due to the risks of emergency surgery while taking chemo. Dr. Hoff actually said he would have probably had me do surgery first if he had seen me in the beginning, but now that we have some early indications that the chemo may be working, then we should continue the course we are on.
In the meantime, it has become increasingly important that I not get obstructed. So they put me on a very restricted diet of virtually no fiber. It is nothing less than an upside-down diet. In the cereal category, Cocoa Pebbles are good, raisin bran should be limited, and shredded wheat is not allowed. I can eat all the steak, eggs, and sausage I want. But in the vegetables category, it says "none". It was a funny moment when the nutritionist had to sort of force her mouth to say "no vegetables". "You know it's hard for me to say that", she laughed. This diet is temporary while I am on chemo before the surgery.
In the good news category, we spoke with his P.A. about my CEA level. She said this is definitely a good sign. The change from 123 to 14 is something for which to be thankful. Also, Dr. Hoff thought the colonoscopy pictures from this week looked encouraging compared to those of two months ago.
Last night, Christine, her parents, Judy Wu, and I all went to a Spanish tapas restaurant in Rice Village. We had great food (albeit no veggies for me!) and enjoyed the Flamenco dancing.
This afternoon I go in for the I.V. chemo at 4pm. We'll stay here over the weekend at the Rotary House to monitor side effects while staying close to the hospital.