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.

Wednesday, July 30, 2003

Or maybe Cypher...

Maybe it is more of a Cypher look than a Morpheus look. Here is Morpheus, Joe Pantoliano, who plays Cypher, and a new character from the next Matrix movie.

Morph_h.jpg Joe_h.jpg Greg_h.jpg

Tuesday, July 29, 2003

No stent and some promising signs

Early this morning, I had a procedure at MDACC during which the medical team evaluated the possibility of obstruction of the digestive tract. They were prepared to put in a stent if it looked probable that I would become obstructed in the next few months, forcing surgery at an inopportune time.

The Procedure
It was immediately apparent during our pre-op discussion with Dr. Lahoti, who performed the procedure, that he felt my situation did not warrant a stent. The problem with a stent is that if my chemo shrinks the tumor, then the stent could become dislodged, causing a realm of serious problems. A stent, he said, is usually not used unless the chemo is found to be ineffective. Because it appears that I will continue chemo, as my side effects in the first round were tolerable (albeit not enjoyable!) and early indications are that it may be doing something good (see below), he wanted to hold off on placing a stent. The risks of waiting were better than the risks of putting it in.
Unfortunately, he was not able to get the probe through the narrow tunnel at the tumor location. He got some pictures and then after I woke up from the anesthesia, he sent me to get a barium enema (BE). More fun. I remarked to the technician that MD Anderson seems to enjoy sticking tubes up peoples butts. But to tell you the truth, these unpleasantries (yes, an understatement) seem smaller and smaller in comparison to the big picture. I am recalling how, in the process of treating cancer, one's modesty and sensitivity to pain go down as one gets carted off to this and that procedure. During the BE, the few times I groaned at bad cramps, they asked if I was alright. I always answered yes because I wanted them to take their time to get the best pictures possible. The BE indeed gave us a good idea of how long the tunnel was through the tumor and assured the doctors that things were not ugly on the other side.
The combination of procedures revealed that the narrowest point in the tract is 4mm across and about 2-3cm long. This corresponds to an approximate 85% blockage at that point in the colon. This sounded pretty narrow to me. However, I was told by Dr. Rodriguez that pretty much everything that goes through this point in the colon is liquid. That�s why I�m not currently having any abnormal symptoms of blockage. As long as the tumor is held in check by the chemo (or better, if it shrinks), I have a decent chance against becoming obstructed.
The consensus between Dr. Lahoti and Dr. Rodriguez (my colon surgeon) is for me to get back on the chemo plan full throttle and continue to keep a close eye on the blockage. Part of this will be a more restricted �low residue� diet. This will assure the liquidity of what gets to that point in the colon. I was also coached by both doctors on recognizing the earliest symptoms of obstruction so that if this occurs, we may be able to put in a stent at that time, holding off emergency surgery.
Is the chemo working?
They have told me several times not to put too much faith in the CEA blood level - that it should only be considered serially over time. This is a marker for indicating the overall aggressiveness of my particular type of cancer. In general, if it goes up, the chemo is not working and if it goes down, it is. For the first month I knew I had cancer, it hovered around 60-75. The normal non-cancer level is below 5. Mine moved as high as 123 just before beginning chemo. At that time they said I shouldn�t be concerned or surprised � after all there was nothing keeping the cancer in check. Yesterday, after one complete round of chemo and a week of rest, my level was 14! I�m interpreting this on my own (we haven�t discussed this with a doctor yet), but that seems to me to be a good sign. My impression of the chemo drugs I�m taking is that sometimes this type of chemo doesn�t work at all, sometimes it only works for a while, and sometimes it works well. The big drop in CEA to me is a good indicator that my cancer is currently in retreat. For now, I am very thankful that it plummeted far more than I even imagined it would. Thursday I will listen to the doctor's interpretation of this number.
Another thing that I noticed was a big difference in the colonoscopy photos of this morning compared with those of two months ago. Yes, it has been that long. Dr. Lahoti did not want to make any qualitative assessment because they were different kinds of photographs. But my job at TI is evaluating digital images and the ones from today looked much better to me, even given the difference in image capture devices. I thought today�s photo clearly showed less bloody walls and a tumor that is less out-of-control looking in form. To me, it looks like the chemo has been stabilizing, even neutralizing the tumor.
�So was it a good day?�, people ask. Well, the 4mm opening is a big concern, but can be overcome if we monitor it carefully and the tumor does not grow. The two indications that the chemo may be working, while not interpreted by a doctor, were encouraging� Two small indicators. Two reasons for thanksgiving. Two small steps towards the goal. And the way to walk 1000 miles is one step at a time.
The rest of the week�
Wednesday is a day off. Christine�s parents are here and we hope to enjoy some time away from MDACC together with them. Thursday I meet with a new clinical oncologist (we are switching from Dr. Xiong and his team). Friday I take the intense IV chemo, followed by the 14 day oral regimen. We will stay in Houston over the weekend because of how I felt last time I took the IV chemo and so that we will be close to the hospital should any problems arise.
Christine and I cherish your prayers. If you are praying, please ask the Lord that my digestive tract would not become obstructed and that the coming second round of chemo would be very effective and would not cause serious side effects. Also, please pray for Christine's migraines. The past weekend was very bad, but today was pretty good.

Susan Dishman


Our hearts go out to the Dishman family at the loss of Susan Dishman, our dear sister in Christ. Susan and her family are dear friends to Christine and I, especially as we fought cancer together. We will miss her dearly.

It has been difficult for us to watch her fighting that horrible disease, as it is the very fight we are now waging. We have been encouraged at how they clung to the promises of God during the fight.

I remind myself regularly of one thing her husband John told us that they had learned in their battle. Don't get too excited at the highs or too depressed at the lows... the only true hope is in Christ.

Sunday, July 27, 2003

Counting hairs

GC1_quarter.jpg G_Dad_quarter.jpg

Jesus spoke of God's knowledge of every hair on our head. Well, my count started going down very quickly this week as a result of my chemotherapy. Within a few days, it was quite patchy. So I decided to cut it off. I call it my Morphius look. Here's me with Christine and with Dad.

But I wasn't the only one...

Saturday, my father-in-law, Carl, drove me to the barber for my haircut to remember. He was in town to drive me and Christine down to Houston for the week at MD Anderson. To my surprise. as an act I interpret as a gesture of solidarity, Carl got the same haircut. Here we are the next day...
G_Carl1_quarter.jpg G_Carl2_quarter.jpg

Monday, July 21, 2003

Outrage at suffering

some thoughts about suffering, evil, and the existence of God

I have been recently thinking about how I consider the presence of suffering in the world - or more specifically, my own. (Yes, it seems a bit odd to think about one's own thoughts, but doing so is sort of a hobby for me.) To put it mildly, I am unsettled at the injustice, or at least the unfairness, of my situation. But I know I am not alone in these thoughts. It seems that everyone else also has an inner outrage at something in the world relating to suffering or evil. For some, it is a simple inner revulsion at a particular form of political oppression or hypocricy. For others, it is an inner angst at the unfairness of suffering. For still others, the presence of injustice in the world causes them an uneasiness.
Much is made about the presence of evil and suffering in discussions concerning the existence of God. It is often said that the presence of suffering is inconsistent with the existence of God. But I would submit that outrage at suffering or evil is inconsistent with the non-existence of God. We humans have a sense that things in the world are not "right". We cry out to our Creator and ask "why?", either consciously or subconsciously. We have a sense of what "ought" to be, even though it is not. This oughtness, I submit, is based on a degree of knowledge of our Creator and his purpose.
C.S. Lewis puts it this way: "When I was an argument against God was that the universe seemed so cruel and unjust. But how had I got this idea of just and unjust? A person does not call a line crooked unless he has some idea of a straight line...Atheism turns out to be too simple. If the whole universe has no meaning, we should never have found out that it has no meaning. "
As to whether the presence of evil is inconsistent with the Christian God, who is said to be loving and gracious, I would simply point to the reference source of Christianity, the Bible. I will readily admit that the light-weight, simplistic, Christianity found in much of America is indeed inconsistent with the presence of evil. But authentic, historic Christian faith is not. The Bible is full of honest reckoning with evil. It does not deny evil and suffering, unlike the situation where no one wants to speak about the 500-pound gorilla in the room. Rather, the Bible confronts evil directly and presents Christ as interacting with, confronting, and having victory over evil. While some might say the Christian God cannot exist with suffering in the world, the Bible implies that we cannot even conceive of the true Christian God without it!
This victory over evil as described in the New Testament is not yet complete. The resurrection of Christ is called a "first-fruit", which happens to be one of my favorite Biblical terms. As a first-fruit, the resurrection is both the taste and the guarantee of the ultimate consummating victory over evil. Whether one agrees with this is one thing. But one cannot say that Christianity is inconsistent because of the existence of evil and suffering. After all, it only exists intertwined with it.
All this is to say that authentic Christian faith cannot be shaken by the presence of suffering. In fact, it cannot exist apart from a true reckoning with suffering. This is not to say that the heart does not wrestle with these things. Mine certainly does! I even find solace in the idea that the heart must wrestle with suffering if it is to find God. One might even say that only in suffering is God most clearly understood. Drawing again from the words of C.S. Lewis: "God whispers to us in our pleasures, speaks in our conscience, but shouts in our pains: it is His megaphone to rouse a deaf world.�

Thursday, July 17, 2003

First chemo round complete

This morning, I took my last dose of chemo for this round. I am quite happy today, and to tell you the truth, proud, to have made it through this first round day by day. Every day I got a little more fatigued, a little more queasy, and a little more nauseated. Last night I had no appetite to eat dinner at all and forced down a bowl of soup. My goal has been simple every day: Eat. Rest and conserve energy. Stay inside. Work from home. Get through the day.

It is quite an odd feeling to force myself to take pills that I know are causing me to feel lousy. One part of my brain says �take it � it�s for your good.� Another part says, �don�t take that � you know how you felt last time you took it.� And still another says, �if you keep getting worse with these pills, where are you going to end up?� In each case for the past fourteen days, the �first part� of my brain succeeded. And now my body gets a rest. Typically, the rest would be for one week, but in this case, because of the procedure on the 29th, I will get a two week rest.

I am most grateful that I did not have the serious side effects that would have forced me to stop taking the chemo. On Saturday, I did begin developing mouth and throat sores. I called my doctor and he said that if it got worse by the next day, I should call him back and I would temporarily have to stop the chemo. I thought to myself, if the sores were caused by the chemo, and if I continually take the chemo, then how could the sores possibly do anything but get worse? So I rinsed with a warm water solution of salt and baking soda, as he suggested, and I prayed. Remarkably, they were better on Sunday and gone by Monday. I must admit I was very surprised. But also thankful.

Thursday, July 10, 2003

Side effects minimal so far

Yesterday, Dr. Xiong called to check up on me. We had a good conversation about future plans and current chemo side effects. He said he was quite encouraged that I am not experiencing very serious side effects. Serious side effects require temporarily delaying the chemo. Apparently, I'm on the good side of the bell curve of typical response. Currently, the worst effect is that I get an upset stomach after taking Xeloda (just after breakfast and dinner). The feeling is similar to how I feel after eating a plate of three-alarm buffalo wings at Jack Astors. The difference is that after a couple of those wing experiences, I vowed never to eat another. But with chemo, I keep taking the drug every day. With each dose, Christine and I pray for its effectiveness against the cancer. One person told me to imagine Pac-man munching tumor cells when I take chemo. But that just reminds me of those annoying little Pac-man sound effects.

Dr. Xiong also told me he thinks the increased physical weakness is simply due to the chemo rather than the low RBC. It's inconvenient, as I'm not good for much physical activity, but it's really nothing intolerable. As long as Dr. X isn't concerned about this, then I'm not.

I'm glad to be back at work today, catching up on activites that I just left hanging a few weeks ago. I'm working at home to conserve physical strength.

Wednesday, July 9, 2003

Back in Dallas

We arrived back in Dallas late last night. It was so good to be back in our home. There were a few more speed bumps and developments along the way.

My parents drove down to accompany us this weekend and to drive back with us. My mother ended up spending Sunday night in a hospital herself, as she fainted and cut her lip and they wanted to hold her overnight for observation. We were relieved to hear that there were no obvious signs of major problems and that she was cleared and will follow up with her doctors in Dallas. We were also glad they could join us the last few days, even with the added craziness!
We had figured yesterday's (Tuesday's) appointment with the colon surgeon, Dr. Rodriguez, would be uneventful - sort of a getting to know each other as there will be surgery down the line. The appointment was at 10 and we figured we'd be on the road by lunchtime. Can you believe we would think like that?
A moment into the discussion with him (at around 2:00), he said he would like to do a procedure to help me but "unfortunately" I was already taking chemo. He cannot do it now that I have already begun and that puts me at great risk of a "nightmare" situation.
"Unfortunately!?!?" Do these guys even talk to each other? I didn't come up with this plan - one of his own colleagues put me on chemo! I'll be honest with you. I wanted to pick up the snazzy LCD flat panel monitor with the high res image of my liver and begin hitting everyone in the room, hopefully striking as many livers and colons as possible. However, I felt this might reduce my chances of getting the "best" care, so I refrained. I said something like, "Well did Dr. Ziong talk with you about this before putting me on chemo?" His reply was "Don't use aggressive language. There's no need to cry over spilt milk." Christine and I swallowed our indignation about the unbelievable lack of communication and administrative organization in this department because we realized there was no need at this point to discuss this with the surgeon. Our priority was to hear him out about what to do now that I am "unfortunately" on chemo.
Dr. Rodriguez is very concerned about the possibility of obstruction of my digestion at the tumor site. If I were to need emergency surgery at my current blood count levels (mostly liver enzymes and RBC), plus the additional blood count problems that chemo will likely cause, then the situation would be, in his words, "a nightmare". He called such a surgery "very dangerous" and as having "high risk of very serious complications." Also, such a surgery could be enough of an emergency that it might have to be performed by an on-call surgeon at a local Dallas emergency room, rather than by Dr. Rodriguez in Houston. We do not want to have our hand forced like that.
So what he wants to do is go in and investigate exactly how obstructed it is now and possibly (hopefully) put in a stent or use a laser somehow to ensure that I will not get obstructed until after the chemo when we want to do surgery at the most strategic time for my treatment. This is not surgery - they can do it all through instruments up my you-know-where while I'm out. The main risk is perforation, because they try to navigate the scope through the tumor to the other side and then put in a stent. Needless to say, bleeding would not be good for me right now.
Dr. Rodriguez wanted me to postpone chemo for a couple weeks before doing another round of chemo. Then he spoke with Dr. Xiong. The two of them together decided that the delay was not desirable, as the risk of holding off chemo was greater than the risk of problems from this procedure. They scheduled this scope/stent procedure for July 29. In the end, I'll only be delaying the chemo schedule five days. (currently, the key drug is taken on a 21 day cycle twice a day orally for 14 days, followed by a 7 day rest).
The five day delay is in part because Dr. Rodriguez wanted to schedule this with who he considers to be the best, most agressive, MD who performs such procedures at MDACC. We were very pleased to hear that he was available on the 29th, which is why we will be doing it then.
In the end, we are glad to be home. And I do feel that even with the astonishing insensitvitiy of doctors, and the truly unbelievable administrative confusion, which caused many delays and unnecessary pain, I am indeed in the hands of some of the most skillful cancer specialists in the world. They found things I'm not sure would have been found and they are doing creative things (like this stent) that were never mentioned in Dallas.
Between now and the 28th, when we head to Houston again for the scope procedure and next round of chemo, I intend to live my life as fully as before. We all live under the shadow of counted days on earth. Everything is trival in light of the fact that we live such short lives. The only meaning I found in living before diagnosis is really the same meaning I find now - to work and to live "as if working unto the Lord." I have no where else to go.

Friday, July 4, 2003

Chemo on the Fourth of July

A lament. Of Greg.

(a blues/country tune)

Stuck in the wheels of a big machine.
Cogs as slow as I ever have seen.
The plan don't fit any other way
Than to hook me up on Independence Day
So ya'll have fun
Don't wait for me.
I'm at Houston's M.D.A.C.C.
I'm hangin' on, but I might just cry
For I'm takin' chemo on the Fourth of July
You can watch them works firin' in the sky
I'll be takin' drugs, but I won't get high
Irinotecan's killin' them cancer cells
And Xeloda's sendin' tumors straight to %*!@
So ya'll have fun
Don't wait for me.
I'm at Houston's M.D.A.C.C.
I'm hangin' on, but I might just cry
For I'm takin' chemo on the Fourth of July

Never thought I'd be so glad to take chemo

It's been a week of some more ups and downs, but the good news is that I am now on chemotherapy. The cancer is in retreat as the counter-offense begins!

The beginning of this week brought some good news. Because Dr. Xiong (incidentally, pronounced "Zhaung") is not an official oncologist for the clinical trial, I was switched to Dr. Lin, with whom we met Wednesday. He and his P.A. turned out to be very good in our estimation - both in terms of their thorough explanations and their apparent knowledge. Furthermore, on Monday we heard from the research nurse that it was likely that I would get on the trial.
Tuesday, I had the endoscopy in the morning. It was clear - no problems in the esophagus, stomach, or esophagus that would preclude me from the trial. Then I went to Methodist hospital for the port-o-cath surgery. It is a double-coin shaped pod (like my old contact lens case) just under my skin beneath the clavicle. It has two catheters than run down towards my heart. The surgery was for 1:30 and I was prepped by 2:00. The surgery didn't occur until 8:30. I was actually quite content with the wait, as I had the word of the surgeon that "he would fit me in" because he thought is was a terrible idea for me to go all the way to Dallas to get the surgery. The surgery was over late enough that instead of sending me to recovery, they checked me in for the night. This was of course not what we planned, but that was the last piece necessary for the trial so I was glad to do what they wanted.
Wednesday came the bad news. Due to an allergic reaction I had several times while taking cisplatin for my cancer 20 years ago, I cannot join the trial. Cisplatin is a cousin of oxalyplatin, which is one of the three baseline drugs with which PTK787 is tested. The managers of the trial have made it clear that if you so much as have had a hypersensitivity to any related drugs, you cannot join the trial. Furthermore, we found out that because I would not be on the trial, I would return to Dr. Xiong. However, upon meeting with him to discuss our options, he was a very different man. He did not have a clinic schedule Wednesday and was far less rushed. He wanted to explain the options and side-effects well. Perhaps this was in part because Judy had complained to Xiong's staff after she sat with us on Friday to experience with us how we were treated. In fact, when we entered the clinic on Wednesday, I felt like a food inspector walking into the kitchen of a restaurant. All of the sudden there was an increase of attention and smiles.
The protocol
The protocol we decided upon, which Dr. Xiong believes is the best approach (and a little better than the trial if I had received the placebo) is as follows:
Day 1: Take intravenous irinotecan. Begin oral Xeloda (oral form of 5-FU)
Day 2-14: Continue oral Xeloda, taken at home
Day 15-21: give body a rest from chemo
Repeat cycle several rounds, then get CT scan to see if liver tumor is shrinking.
There's a long list of probable and improbable side effects, which I won't go into now. The staff at MD Anderson tell me that their experience shows that different people have widely different side effects, and at different times during the chemo protocol. I am praying that I will especially not have the bad ones, which require postponement or termination of the particular drug. More than that, of course, I am praying the drugs will be very effective. Incidentally, the irinotecan can have very serious effects during the first treatment. Fortunately, I did not receive these for my first dose.
This week, we moved from the Jonsson's house to the Rotary House, a Marriot-managed hotel that connects to MD Anderson. This gives us close access in the case of any chemo side effects or if my fever begins to run high again. Thankfully, my fever has been well under control this week. The Rotary House also has amenities geared towards cancer patients, such as MD Anderson staff on call, a video library, and connection to MDACC scheduling computers. Finally, it saves time and energy for Christine and I, which we have both been sorely short on this week.
We will be here until Tuesday, when we will meet with Dr. Miguel Rodriguez-Bigas, the colon surgeon. It is advantageous for him to be familiar with my case should the need arise for immediate surgery.
Looking forward
Finally, I'll share a little of our excitement with you. In February, Christine and I planned a 10-day vacation to Teton and Yellowstone for our tenth wedding anniversary (We were married Dec 1992). It is scheduled for late August. Since the original diagnosis, we have been hoping in the back of our minds that once the chemo schedule was made that it would not conflict. All the other protocols discussed would have required us to cancel or significantly shorten the trip. It turns out that if we can stay on the current chemo course with no complications, our vacation is planned right where it needs to be to fit between treatments! We are continuing to look forward to that.
Thanks for your continued support and prayers. We look forward to seeing our Dallas family and friends when we return next week.