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.

Tuesday, April 25, 2006

Some Easter pics

In spite of how I was feeling, Christine and I had a very enjoyable Easter this year. Her parents Carl and Sue drove down for a week from Delaware to help out and to visit. Her sister, Sarah flew down for the weekend with little Mati and Mia.

Here are some pics.

EasterDinner2006.jpg Easter dinner. Mati, Sue, Sarah, Greg, Mia, Christine. Carl is taking the pic.
GregChristineEaster2006.jpg Greg and Christine after Easter service.
GregMatiKazooBand.jpg The Greg and Mati Kazoo Easter Band

On resurrection and tomatoes

cherry_tomatoes.jpeg I have been thinking a lot lately about the resurrection of Jesus. Thus, Easter had special significance this year. I gave a short address at church Easter morning about this. You may listen to it by clicking : On Resurrection and Tomatoes (streaming audio, 4 1/2 minutes).

- Al's been thinking, too, about the resurrection.
- Here's something I wrote on Easter earlier in my treatment (2004).

Thanks, Bill and Rollin, for editing and setting up the audio link.

Saturday, April 22, 2006

First round complete

I am just now recovering from the first round of chemo. This was as rough as any round I have had. That's why I haven't written in a while.

The week of the chemo I was very sick. The following "rest" week, my intestines would not hold anything - I lost every bit of fluid and food I could get down. As a result, I spent every day this week at the outpatient clinic hooked up to IV fluids and potassium. The doctor was concerned at the slow recovery. I was bummed because in the long term, I don't want them to stop, delay, or reduce the chemo. And in the short term, I wanted to get back to work and catch up with things at home after a week of being sick.

Things are finally better today. So I get about two days of break and then the next round begins Monday. I'm ready to go. And I am simply hoping that this past round was a fluke and not a sign of incraesed problems to come.

Tuesday, April 11, 2006

A custom protocol for a feisty patient

After seeing Dr. Shapiro on Wednesday (Dallas Presby) and before seeing Dr. Eng on Thursday (MDAnderson), the two of them had chatted and figured the chemo I needed to take next is Erbitux+irinotecan. Erbitux (a.k.a. cetuximab) is the drug that landed Martha Stewart in prison relating to its FDA approval and resultant effect on stock price. With FDA disapproval, the stock price was supposed to fall. The next year it was actually approved because of how well it works. "It works" in the area of cancer is not the same as in electrical engineering - I think around 10-15% of patients see response. One great thing about Erbitux is that it seems to "reinvigorate" irinotecan when used in combination - giving irinotecan a new chance to work when by itself it had stopped doing so.

I was not too happy about this decision - I was not ready to give up on one or both of the previous chemo protocols I have taken. So I started asking some hard questions about this in my meeting with Dr. Eng. You might say I argued. Hard, even. Christine was shocked. I think I was, too.

But what is taboo when your life is at stake? And what harm are questions seeking understanding anyway? The way I learn and enjoy discussion with many of my friends and coworkers is to ask hard questions, often playing devil's advocate. To me, it is a sign of respect. And it seems to generate the best overall ideas. But not everyone likes it. Some people hear it as disrespect. Or a waste of time. But like I said, when life is at stake...
To my pleasant surprise, Dr. Eng was not taken aback at all. She took all the time I needed - and she listened well, as evidenced by her restating my questions better than I could express and the fact that her answers directly addressed these questions. I expect and pay for medical treatment. But I considered this engagement a bonus.
This is not to say she did not counter me. She said that the model for understanding how chemo works is that when you have finished its prescribed course, and the remission is short (in my case, really only 4 months), then you consider that it is losing its effectiveness and you need to move on to another drug. Back and forth we continued in this surreal interchange. And then, as surprised as I was that the debate was even taking place, I was more surprised that she began to reconsider. She even began to agree.
"Wait, wait," I protested. "You're the expert! I have no idea what even I've talking about." Surely the instincts of Dr. Shaprio and Dr. Eng have more validity than my novice way of thinking. On the other hand, we are all humans. I have been following one case for three years, thinking about it daily. They had to digest a ream of my records in a short time while treating dozens (hundreds?) of patients.
In the end, Dr. Eng did not simply say "ok". She took my concerns and fashioned a counter-offer. I was thinking along the lines of the more recent protocol, which kept the lung nodules out of the CT scan for the many months I took it. She thought we should instead go with the original 2003 protocol: 5FU + irinotecan ("FOLFIRI" in oncolingo). Maybe there was still some oomph left in the irinotecan. And she wanted to go with intravenous 5FU - it will be easier on my liver than the oral form. So maybe I won't have to discontinue it as I had to do with the Xeloda in Spring 2004 for that reason. I asked her several questions trying to discern whether this new plan was some sort of appeasement (i.e. let the crazy guy do what he wants). That's not it, she responded. She thought this was a good plan and drew it out in a flowchart that reminded me of a DLP system diagram. So I was convinced.
Here is the custom protocol: 8 straight weeks of FOLFIRI in 14 day cycles, immediately followed by a CT scan. If the nodules remain stable or reduce(!), keep the chemo coming. If not, we haven't wasted too much time and can try the Martha Stewart recipe. Dr. Eng seemed eager about the plan. I was encouraged myself, as odd as that may sound considering the overall bad news. It was a good thing.
I then spent an hour at Salento - a coffeeshop in the Village with wireless - while Christine walked around. As the live jazz guitarist played, I poured over my blog, which is becoming a great tool as my memory refresher. As I read, I became even more convinced this is a worthy plan. Irinotecan, I was reminded, was involved in the dramatic destruction of my tumors back in 2003. Again I was reminded how far we have come. In just 2 rounds, my primary tumor was found with surgery to be reduced to 20% viability (translate: 80% dead). And in 3 more rounds, my huge liver tumor had shrunk so much that my surgeon said "stop the chemo, this man is surprisingly fit for surgery". Following the liver resection, Dr. Hoff took me off the irinotecan because it had done its job. He instead had me take the Xeloda alone to prevent further tumors. So maybe that irinotecan was pulled from the lineup with some hits left to give. Time to pinch hit. (Replaying a batter after being pulled is not against the rules. In fact, I'm figuring out there aren't really any rules here). I'm hoping irinotecan will be my Kirk Gibson.
Yesterday, I took the irinotecan at Dallas Presbyterian. Today I am reclining at home connected to the 48hour fanny-pack pump of 5FU. Dr. Shapiro stopped by my chemo chair yesterday during the irinotecan drip to chat. Apparently he and Dr. Eng have been talking. "Is Dr. Eng just appeasing me here?" I asked. "No, he assured me. We actually like the feisty patients". Cool.

Friday, April 7, 2006

Lung biopsy positive for cancer

Yesterday, I discussed the biopsy result with Dr. Eng at MD Anderson. It is indeed colon cancer that has spread to the lungs. I had actually heard the news the day earlier from my Dallas congologist, Dr. Shapiro, because they had talked. All conventional thinking says this is not curable. But Dr. Eng is not quite ready to throw in the towel. In fact, if the chemo works well, she is not ruling out the prospect for surgery in the future to remove the nodules (that is really the only known way to get rid of them permanently, but conditions for surgery are tough to meet). She has two (only two, but more than zero) patients who are clear 1.5 and 3 years out from where I am now. We have to keep in mind that 4 of the 5 available chemo drugs for colon cancer were approved later than 1998 and 2 of them were approved in 2005.

Still, this news is not good at all. Chemo does not tend to work as well in the lungs. And when tumors affect the lungs, you get fluid in them - very bad. But I'm ready to get going with some more treatment to kill these little guys in my lungs. Chemo begins Monday morning in Dallas - IV at the clinic with home pump for 48 hours. Every 14 days. Four rounds. Rough days ahead.

It is very important for this chemo to work well. The plan is a bit risky - I'll tell you more about it later. My protocol is unique.

Two things were impressed on me in my discussions with these doctors. (1) It is very rare for someone diagnosed three years ago with Stage 4 colon cancer to even be here (diagnosis was May 03). I am renewed in thanksgiving to the Lord that everything has gone so well - three difficult surgeries that went perfectly and incredible response from chemo. I am so happy to be alive. One reason Dr. Eng and others want to stay aggressive is because I am already a unique survivor. I thank you all for your prayer for me these past three years. (2) I need some more miracles. Please pray for significant tumor response to the cancer.

Saturday, April 1, 2006

Biopsy complete

The biopsy went by without any problems. I was more awake than any other biopsy or other procedures I've had with Versed/Fentonil. Thus, I watched the whole thing as he guided the needle into my chest. Very weird.

We'll discuss results at a meeting with my new oncologist, Dr. Chen, on Thursday.

Monday through Wednesday, Christine will be getting an IV treatment for migraine at home. It is supposed to work well for those who have been stuck in a constant migraine. It is typically inpatient, which is why they have tried many other things first. But it can be administered at home with a little training from the home health care nurse.

Christine and I are taking a weekend away, so I'm keeping this brief.