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.

Thursday, October 29, 2009

A Very Good Day

(from phone) cancer completely stable! feeling better. still some fever. blood doc gave ok to go back 2 dallas. he will call every day through weekend. i thgnk he just wants 2 talk blood on hal'ween

Wednesday, October 28, 2009

A Miserable Day

Yesterday, I had a very bad day. The previous day I had felt quite well, enjoying a mind-cleaning drive down to Houston for my round of tests and meetings at MD Anderson. But when I awoke, I was achy, shivering, and increadibly fatigued. It is not a trivial matter changing an appointment at MDA Anderson. You just go. So I went over to the hospital anyway for my appointment with Dr. Manzullo of the fatigue clinic.

When they realized my temperature was over 102, and my blood work showed that I was "neutropenic" (low white blood cells), I became high prority. Turns out that neutropenia is not uncommon for chemo cancer patients. Nor is fever. I've had plenty of both. But when you have both, it can be dangerous. Without enough white blood cells, you cannot hold off whatever is causing the fever. Since I was already lying down in one of her waiting rooms, the doctor let me stay and worked the phones with my different doctors so I could avoid the standard response - send patient to the MDACC ER. "Bless you," I said to her. "Take however long you must, just don't send me there."

They decided to put me on the MDACC protocol for neutropenic fever, which is a 7-day outpatient deal. The standard treatment for this in most hospitals in America, one doctor told me, is to admit you in the hospital for treatment. But since they have great outpatient infrastruture and resources, because the various doctors are in close communication about your case here, and because over 90% of cases end up not being dangerous, they have designed an outpatient protocol that works well.

My day was not over. The next step was to go to the blood center and get more taken. Then to the pharmacy for antibiotics. Shuffling around the campus, wrapped in blankets, and shivering, I proceeded step by step, minute by minute. I finally made it home, took a nap, only to return a few hours later for the 5-hour CT Scan/barium enima test. Since cancer doesn't take breaks, neither does MD Anderson. So what if you've got a fever and feel miserable. You still need those pictures.

I am so thankful that my friends Belle and Peter have a place for me to stay only about 5 minutes from the hospital. That will make this outpatient process so much easier.

Today I went in for day two of the protocol. They took more blood and examined me. I also saw the blood doctor - I'm not sure what to call him - he's an internist who specializes in this stuff. (it seems appropriate I will be seeing a blood doctor over the Halloween weekend!) No conclusions yet. He said they'll probably know which direction things are going tomorrow - it takes three samples to establish a trend, right?

All this fever stuff is just a bump in the road. The big reason I'm here was and remains to figure out if the cancer is stable or advancing. I still find that out with an appointment with Dr. Eng tomorrow.

Meanwhile, they tell me lots of rest and drink liquids. I guess that's instead of the solids I usually drink.

Monday, October 5, 2009

Fever gone

After nearly a month of infection with fever, I think I'm out of the woods. Four days straight now of no fever. Part of my mind was questioning whether I would ever feel well again. It was a dark hole and I'm so glad to be crawling out of it. Next round of chemo is Wednesday.

Christine finished her initial meetings and tests at the Chiari Institute and the medical team there believes surgery on her neck will significant help her pain and various nervous-system symptoms. They diagnosed her as indeed having Chiari malformation - it has to do with the bone and nerve structure where the brain channels into the spinal column (more info on Chiari malformation). It sounds like a major surgery ordeal with hospital stay and months of rehab. She will stay for now with her parents in Delaware and is working out the logistics including when is the right time to do it.

Here's a fun pic that my mom unearthed cleaning out some old stuff. I'd say it is around 1975 - Uncle Ron's tractor in the Ozarks, a stone's throw from Table Rock Lake. I'm with my sisters (in his lap), cousins and aunts.

Tractor Gang.jpg click to enlarge

Monday, September 28, 2009

Denver trip, continued infection, Christine progress


I took an extra week off chemo, which I am allowed to do periodically, to visit my sister in Denver. That was back on the tenth of September. We had some good time together and it was great to see them. But soon after I arrived, I came down with a fever - something viral the doc thinks. Unfortunately, I spent most of my time in Denver in bed.

Quick story - I did manage to get out of bed to watch the famous Charles Burck play (very) little league soccer. To be fair to everyone, it was his turn to play defense and he dutifully stayed back and did everything he could to defend the goal. His team was down 2-0 at half. He raised his hand and halftime. "Yes, Charles." "Can I pleeeease play offense." The coach agreed. Charles scored three times in the second half as they won 3-2.

After returning to Dallas, I remained sick and I still have not completely escaped the fever - even through last night, when I still had a mild fever. During the worst stretch, I had significant fever almost every day for a stretch of about 10 days.

At first, my doctor put off chemo another week, saying that it would be too risky since chemo often drops white blood cells, which I need to get rid of the infection. But another week went by and this past week he decided to go ahead and give the chemo anyway. He didn't want to give the cancer any more break. Bottom line - I got the double hit of chemotherapy while already sick.

Bill_Ord.jpgSo I have been pretty miserable for some time now. If you've been wondering where I am or why I haven't returned emails or kept up with something - well, that's why. Today is the first day I actually feel a little better, and I'm really hoping and expecting to pull out of this hole eventually. I was able to get out of the house yesterday to enjoy attending my friend Bill's ordination as a pastor in the Presbyterian church.

Christine Update
Last week, Christine successfully completed a large set of tests at the Chiari Institute near NYC to test if the underlying cause for much of her continued pain and headache problems is something called Chiari Malformation. Today she goes back to meet with the doctor/surgeon to go over test results. Her parents are caring for her and they are all staying with her sister in NJ during the trip.

Tuesday, August 18, 2009

Results stable

CardinalsWithPecks.jpgIt has been a long time since I've updated you. Thanks for all the expressions of concern in my absence.

I am taking a rather difficult treatment of a chemo protocol called FOLFIRI+Avastin. It is administered in fourteen day cycles. Typically, I'm pretty sick at the beginning but by the fifth day or so, I'm more functional. Nothing severe or dangerous - just makes me feel lousy, kind of like the flu with intestinal problems. Hard to believe I've endured 14 of these since February, when I started the current plan.

A week ago I went to MD Anderson for a round of testing and meetings with doctors. The good news was that the tumors (of which there are three, all around a couple centimeters) are all completely stable. This means the chemo is working to hold them back. I will continue this chemo plan indefinitely as long as my body can take it and the situation is stable. The doctors continue to marvel at how long this class of chemotherapy has been effective. We're way past six years now in a field where 1-2 yrs is considered quite successful.

greg_sarabeth.jpgI am enjoying the simple life. It is really surprising how wonderful life is when it is stripped of so many "good" things. Like work and accomplishments and accumulation of stuff. I've found that music (playing guitar, mostly) is a great therapeutic retreat when I feel the sickest. Much better for the soul than TV, I've discovered. You can check out some of my music on my youtube channel. ( Unfortunately, reading has become a bit more difficult - hard to concentrate when I'm feeling crummy. I have many good friends surrounding me with support and my church has been a wonderful source of nourishment for me. I've been able to visit family in St Louis and NYC and hope to see my sister (Julie) in Denver soon. I'm on full medical leave from TI, as I am unable to work under the chemo.

I am growing in learning how to significantly reduce expectations on my body and live well with what I've got. Not much differently from what we all do, really.

Christine is still pursuing medical help at her parents home, so my friend Bill Burns has been staying with me at my home. He just turned forty, so if you talk with him, be sure to give him a hard time.

Sunday, May 10, 2009

Update - no E.R.

The bleeding episode stopped as suddenly as it started. I no longer coughed any blood after waking up with the problem. The doctor on call said I did not need to be seen today and can wait until Tuesday when I'm scheduled to go in anyway for chemo to see my doctor about it.

Really weird day. I awoke in a panic coughing out fresh blood and wondering what in the world was happening to me. Now everything seems so normal again. Like nothing ever happened. One thing about this cancer thing - always something interesting going on.

Thanks for your support and for your notes of care and concern.

prayer request

Hi friends. I awoke coughing up fresh blood. Disconcerting to say the least. I've talked with the on-call oncologist and pulmonologist in Dallas. This could actually be a tumor vessel being exposed from effective chemo. That sounded like a good thing to me. Or some other things not so good. In any case, this could lead to day at ER, etc. I'm hoping it was a one time thing. Going to pick up a couple Rx they prescribed, incl anti-biotic to prevent/address any infection issues. If it stops, I don't have to go to the ER. I'll let you know how it goes.

Thursday, May 7, 2009

Good news - tumors retreating

I received two simple pieces of news today from Dr. Eng.

First, the three tumors we are watching carefully all reduced measurably in size. Not sure the amount yet, as there is not yet an official radiology reading, but even I could tell they were a bit smaller.

Second, In February, they took blood for a sophisticated DNA test they have for chemo success prediction. Today I found out that the one remaining FDA-approved chemo drug for colon cancer that I have not taken, Erbitux, is likely to be effective for me in significantly slowing down progression of tumor growth. In other words, the last unused chemo weapon I have in my arsenal is loaded not with blanks, but with real ammo.

Tonight, I lay down a thankful man.

Hopefully, I will share more details of the week in a later post. The week was good all around. Just wanted you to get the results, as I know many of you are praying for me. Thanks.

I will continue with the current protocol - more heavy chemo this coming week.

Tuesday, May 5, 2009

Restaging Checkup

Hi friends.

I am in Houston for my checkup. I have been enduring three months of chemotherapy treatments in Dallas. The recipe is a 14-day cycle called FOLFIRI with Avastin.

This morning I went to the MD Anderson fatigue clinic and tomorrow are all the radiology tests. My fatigue level has gone from 4.5 last fall to 3.5 in March to 2.7 today. It's a somewhat subjective scale based on questionaires, but I do think things are improving in that area. Part of it is reduced expectations - I'm spending less active time in a quality manner instead of more active time in a spread-too-thin manner.

Thursday I meet with Dr. Eng, my quarterback oncologist. Hoping for some cancer-is-retreating news.

My very good friend from the past, Mike Ernst, decided to take a break from his pastoral duties in Northern California and flew to Dallas yesterday to accompany me for my trip to Houston. We are having a great time catching up.

Christine, with her doctor and parents, decided that she really needs some more proactive medical care and her parents are going to help her pursue that from their home. So Christine headed northeast to stay with them for a while. Our prayer is that she can get some real help in that area. I have not had the energy with my situation to drive the process of getting her specialized medical care. As for me, instead of staying alone, my friend Bill Burns has offered me a room and I am staying with him. He keeps an eye on me as I go through the treatments. I can also stay with Mom and Dad should I get so sick from this chemo that I need direct daily care, which so far, thankfully, I have not.

Lots of Cinco de Mayo celebration today here in Houston. Should find some good food and music tonight. Might as well enjoy life amidst the dark cloud that can surround weeks such as this.

Tuesday, March 17, 2009

Madness Time

It's that time! Join the third annual Greg's Place Bracket challenge.

You don't need to know much about basketball to join. Somebody last year picked teams based on how many people they knew from that school - and did pretty well.

I've got a half bottle of unused Xeloda chemotherapy worth $750 that I'll donate as the prize.

We're going to do it again on Yahoo! Sports Tournament Pick'em!

To join the Greg's Place group, follow this link.
Group ID#: 167535
Password: nomorecancer

Wednesday, February 11, 2009

Going to being heavy chemo

Dr. Eng and Dr. Hofstetter strongly recommended I go back on the strong chemotherapy that I took much of 2007. It's called FOLFIRI with Avastin. We need to shock this tumor activity back into submission.

I start Monday. It makes you feel very, very crummy. It is a fourteen day cycle I will repeat until May's reassessment. There are varying degrees of crumminess during the cycle.

I haven't really thought through how I'm going to tolerate this. My folks drove me back from our aborted Houston mission yesterday. I may need to call upon them to continue to care for me next week depending upon how sick this stuff will make me. Christine's parents have really helped out as they are currently caring for her. When you're our age, aren't we the ones that are supposed to be taking care of our parents? We're fortunate to have them.

Monday, February 9, 2009


I'm still groggy, so can write more later.

I remember getting the epidural, getting positioned on the tracheotomy table, getting the Versed high, and then I remember no more. It was very strange to wake from general anesthesia in the recovery room and not have been cut.

The cancer has invaded the wall of the trachea at the spot where it branches from two pipes to four on the left side. It is slightly into the upper and lower lobe pipes. Thus, the whole lung would have had to go. Dr. Hofstetter discovered it when he decided to do a quick bronchoscopy before cutting into me - just to see what he might be dealing with. He decided based on what he saw that the other plans are better.

It's a bummer. Surgery is the only sure way to completely kill a tumor. But this turn of events makes it clear that with all the back-and-forth of deciding on the best treatment plan, that this surgery was not the right plan.

I'm going to meet with Dr. Eng tomorrow to get the interpretation and new plan. I have two other weapons - FOLFIRI chemo, which last time we used it worked really well at knocking the tumors into nearly-dead state, and radiation, which two weeks ago was plan A.

I haven't really figured out what all this means in the loopy state of my mind. It hurts to talk - all scratchy and irritated. I'm going back to sleep.

Surgery not an option today

Dr. Hofstetter just came out to talk with Jim & Judy. Once he got in, he realized the tumor's position was more complicated than they had previously thought, and the risks of loss of an entire lung were much higher. The doctor decided he could not do the surgery because he was not convinced he could get all of the tumor out without serious consequences.

It's worth noting that the tumor is not any bigger than previously thought, but its position is just more complicated, so the original surgery plan is not feasible. Greg's doctors will get together and advise on next steps.

Greg will be coming out of anesthesia shortly, so I'll wait for him to provide more details. Thank you all for continuing to pray.

Sunday, February 8, 2009

Let's do it

The seventh night before surgery. Always an odd, quiet sort of night. My body so satisfied and at peace, not knowing what it is in for. My brain knows but cannot sound a warning because it speaks another language.

The only sound is the A/C and an occasional ambulance navigating the construction on Holcombe. Some poor guy must be in pain.

The seventh dinner before surgery. A little Greek at Niko Niko's on Montrose. Lung surgery is the best - they let you eat the night before.

For the seventh time, brother-in-law Mark will be updating this blog until I can get online. Stay tuned.

Not much left to do but get a good night's rest. The elders prayed for me today. Rally caps are on. Hope Hofstetter's resting well. Mom and Dad drove me to Houston. I'm at the Rotary House a few hundred yards from the operating room. My ride comes at 5.

This is my game plan. Time to move forward. Lord, have mercy.

Wednesday, February 4, 2009

Rally Caps

If you're on facebook, check out the group "Rally Caps for Greg." Several friends are pulling for the late-inning big hit.

You can post a rally cap image, like charter member David's below


If you're not on facebook, never mind.

Monday, February 2, 2009

Where's the problem?

PET Scans.jpg

Click image to enlarge.

The surgery will be on the left hilar lymph node and the little lung nodule on the left. (the two scans on the right of this overall image)

By the way, I hacked these images from the clinic computer, gmailing them to myself, from the screen in the little waiting room while I awaited the nurse to return. Don't tell anyone.

Thoracic Surgery Scheduled Feb 9

I will have thoracic surgery on Monday morning Feb 9 at MD Anderson Cancer Center in Houston, TX.

The story for how I arrived at the decision to move forward with surgery is a long one, spanning appointments with Dr. Eng (clinical onc), Dr. Hofstetter, (surg onc), Dr. Welsh (rad onc), and back to Dr. Eng over the course of the last three weeks. I've been up and down I-45 a bunch in the last four weeks.

I have right and left hilar lymph nodes that are increasing in cancerous activity and growing slowly. The hilar lymph nodes are above the heart, in Grand Central Station at the center of the chest, adjacent to the pulmonary arteries. I also have a small cancerous nodule in my left upper lung.

The options they wrestled with are:

1. Do nothing
2. Continue the "moderated" chemo plan I've been on for a year (XELODA+AVASTIN)
3. Take more severe chemo (5FU, Leucovorin, Irinotecan, Avastin)
4. Radiate both lymph nodes
5. Do surgery on one of the hilar lymph nodes and radiate the other.
They decided to offer me #5 as a reasonable approach. The background is as follows:
The default treatment for a guy like me would be to simply continue chemo. Hippcrates avers, "Do no harm." Surgery and/or radiation does a lot of harm, with uncertain benefit. If the cancer is going to kill you, why butcher the body on the way down? Good question.

* Due to my youth and personal approach, they are on board with my continued highly aggressive game plan, which has served me well so far. Three of my seven surgeries were unconventional for someone with stage four colon cancer. And yet, as we chip away at the leading tumors, it seems to me that I have been buying more years.
* There is some data to suggest that if a stage IV patient can get to NED (no evidence of disease on the scans), even though they figure there is plenty of microscopic activity, statistics show there can be extended life. So we would like a plan to get rid of both of those hilar lymph nodes.
* For a while, the leading candidate was #4. It would probably not kill the tumors completely, but would render them nearly dead for 2-3 years. And would not do as much damage to lung capactiy as the surgery. The problem is that all that radiating (beyond being painful for the esophagus) would make it impossible to ever do surgery in that area in the future. We don't like closing option doors.
* In plan #5, the surgery proposed on the left, more active, hilar lymph node is extremely challenging. Dr. Hofstetter said it is like working through a hole less than an inch across, and picking out a piece of sticky bubble gum that is wrapped three-quarters of the way around a wax-paper thin artery without tearing the wax paper. He believes it is very unlikely he can do it without having to remove half of the left lung. This will leave me with an overall estimated 49% lung capacity (it is around 80% now). He would wedge out the little lung nodule on the left while he's in there.
* Due to low remaining lung capacity, he figures it will not be wise to then remove the right one via the same kind of surgery. But, after consulting with the radiation oncologist, they think they can then radiate the right side. Dr. Eng told me she did not think they had ever taken the surgery-on-one-side-radiate-the-other approach before. We're on the edge of cancer research here! More than one oncologist I've talked to thinks this plan is a bit crazy, while others see it as a viable plan.
* If this surgery and radiation plan works, I will get to NED in a couple months.
* Then we'd follow up with more chemo just for fun.
The home run would be if Dr. Hofstetter, a surgeon I greatly respect, could cut out that hilar lymph node without removing half the lung. Then, we'd have the option for additional surgery on the right side instead of radiation. Pray for this guy's hands! I've had a couple of 9th inning home runs by other surgeons in the past.
I have been aggressive all along. Taking calculated risks, using my bargaining chips of youth, not-so-necessary organs, parts of organs, and pain toleration. That's the way I play ball. I am doing this because it is just too difficult for me to change my way of playing now. As my friend Tyler put it, "if you go down, go down swinging!" I am going to remain consistent to who I am and have been. So, Tyler, I'm going to swing for it.
As a Christian, my security lays in the resurrection of Jesus, which is a taste and guarantee of what will come for those who are in him. I do not want to recklessly test the precious freedom that comes with such security, but rather enjoy it while sharing in the fellowship of his sufferings. That probably sounds weird to some of you, but it really is at the core of my thinking about all this.

Wednesday, January 7, 2009

Three more months - still stable

Hi everybody. I know it has been a long time since I wrote. I haven't been much in the mood to write. I've been continuing chemo - the moderate level - in hopes it is enough to hold the three small tumors at bay.

Today I met with Dr. Eng at MD Anderson after getting CT scans of my torso. The preliminary look (a radiologist has not yet analyzed it) showed that everything looked the same. This means things are stable and I can continue on the same path. The two lymph nodes seems about the same size and the lung nodule may have even shrunk a bit.

I asked if the criteria for surgery might have changed now that I've been stable for a year. (11 months) She thought that was a reasonable question to ask and will talk to the surgeon about it.

With this level of cancer, stable is very good. I am relieved, relaxed, and thankful to the Lord for another three months.