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, December 13, 2007

Twelve Days of Chemo - the Video

These are the children of my twin sisters, Susan and Julie. The lyrics are in this entry.

For my grammy, i'd like to thank Paulo Hoff, Miguel Rodriguez-Bigas, Steve Perkins, Nicolas Vauthey, Nora Janjan, Cathy Eng, and Gabriel Shapiro for providing these miserable, yet inspiring, oncological gifts

My YouTube videos are collected here.

Wednesday, December 12, 2007

So just how unfair is it?

Most folks, upon being diagnosed with stage IV cancer, start thinking about how unfair it is - thoughts about how much life they are missing out on. OK, so what happens when an enginerd gets stage IV cancer? He does not approach things normally. Instead, he breaks out Excel, googles to find insurance actuary data for the US, and comes up with something like this...


Click image to enlarge. With Internet Explorer 7, it may be more readable by then hitting ctrl-shift-+ or ctrl-shift--.

Another enginerd fact ->
79% of visitors to Greg's Place use Internet Explorer, 14% use Firefox, and 3% are those cool folks who use Apple Safari.

Tuesday, December 11, 2007

The CT Scan

The CT technician had a knack for photography and wanted to take some shots. I know a lot of the CT staff by now - this was scan #23.

Picture 066.jpg

The smile hides the fact that there's a tube up my rear.


Tuesday, December 4, 2007

Chemo effective, so I get more

After seven rounds of chemo (four since the last scans), the chemotherapy is fighting back the lymph node tumors. I have two such tumors. These two guys are the source of all the concern. I also had a very small nodule in the lung, which they were not sure is cancerous, may actually be scar tissue, and would not be too difficult to remove if it were cancerous. That lung nodule is no longer showing up on the scan.

Since chemotherapy cannot eradicate this cancer completely, I have been pushing for more surgery. So I met with both my surgeon, Dr. Hofstetter, and my clinical oncologist, Dr. Eng, recently.

Two weeks ago I had my update CT scan and me with Dr. Hofstetter. He detailed for me what, exactly, I'm asking for with this surgery. Serious stuff it turns out. The hilar lymph nodes are wrapped around the pulmonary artery, so "scraping" it off puts the whole lung at risk. In addition, the two nodes are unfortunately one on each side. This means two complete surgeries, like I had in Jan & Mar of 2007. Painful. Lung surgery is done one lung at a time, so you can breathe with one while the surgeon deflates and works on the other. He would go in through the ribs in the back to get one side. Then I'd have to recover for a couple months and do it again on the other. Another risk is that the lymph nodes are located such that it may be necessary to remove completely the upper lobe of the given lung to get to it. I would have enough capacity to live, but one would rather keep as much lung as possible. Finally, he reminded me, that it is very unlikely this surgery will cure me completely. Given all this, Dr. Hofstetter wanted to make sure we were doing everything else possible first - in other words, keep doing chemo if it is working.

This is certainly scary stuff. Surgery is a risky path. But the way I look at it, having cancer in your body is a risky path, too.

I then met with Dr. Eng two days before thanksgiving. She had been talking with Dr. Hofstetter. Given the sobering difficulties with surgery, I was surprised how they both seemed to be treating the surgery path as viable. Because of several reasons, Dr. Eng thinks that after four more rounds, the window of opportunity for surgery will be better. And it seems like they think it might be a good option, after all. I've been asking them and other doctors about this kind of surgery and I'm finding that no one recalls going in specifically to take these lymph nodes out. The reason is that typically by the time colon cancer shows up in these lymph nodes (which is a common place for it to show up), there is cancer all over the place. In my case, everywhere where they've mopped up using five surgeries and radiation has stayed clean. These two nodes are the only signs now of the cancer. That and my youth, Dr. Eng explained, provide reasons to do the surgery.

The option to continue chemo was strengthened by the result of the CT scan. Yet again we saw dramatic success of the chemo. Four rounds ago, the largest of the two nodes was 4.7cm. Now it is less than half that. What is so remarkable about this is that I have been taking 5-fu based chemotherapy since 2003. Only half of colon cancer cases see significant response from chemotherapy at all. And those that do, it eventually becomes ineffective by a year to two years. Mine is still responsive after four-plus years. Also, the cancer, they say, is growing very slowly relative to what is normal. Is there such a thing as good cancer?

So four more rounds of FOLFIRI plus Avastin. The duration of the rounds will be 14, 21, 14, and 21 days. This gives an extra week for Christmas, and an extra week rest at the end before travel to Houston for the next scans, which are scheduled for the last week of January.

Christine has been doing as badly as we have seen. She is in much pain most of the time. My sisters and their families flew in for Thanksgiving at Mom and Dad's house here in Dallas. The night before Thanksgiving, Christine's migraine got to the dreaded level she sees about twice-a-year where the pain causes her to throw up and be at a 10 level. By morning it was completely unbearable. So while everyone shared turkey, we sat in the ER as they treated her pain with the power drugs.

Still, I give thanks at yet another "this could be my last" Thanksgiving. And I look forward to yet another "this could be my last" Christmas. Isn't that always the case, though?

When I sit and listen to the doctors wrestle with my unique case and I watch them puzzle over how to treat it, I give thanks. No one really expected me to be here at this point and that's pretty cool, I think. Here I am, continually coming back for more appointments, asking "ok, now what?" I don't feel strong - I am pushing along day by day with a just-enough strength. "The Spirit helps us in our weakness. We do not know what we ought to pray for, but the Spirit himself intercedes for us with groans that words cannot express."

Tuesday, November 13, 2007

Tests and surgeon appointment this week

I have completed my four rounds of chemo since the last scan. It was tough going, but I made it. Christine's pain condition only seems to persist, even worsen. We're a pretty pitiful pair.

This Thursday I'm going to get some scans at MD Anderson to see if the chemo is effective. I meet with the surgeon, Dr. Hofstetter, that afternoon to see if he thinks the two lymph node tumors are rescectable. I'll likely just fly down for the apt and conference call with Christine for the appointment. The doctors continue to talk as though it is a long shot, so as not to get up hopes, but at the same time, they say my situation has been unique and they are open to the possibility. Dr. Hofstetter does not need the radiologist to read the scan, so I'll meet with him right afterwards on Thursday afternoon to get the results.

Some of you wondered if I got the prosthesis. I guess I was not too clear in the blog, but yes, I did. I am getting used to it and still need to go back for a couple of days for some more adjustments. Overall, I'm very pleased and comfortable on it.

It has finally cooled off here in Dallas. I went out back on the porch for a long sit this afternoon. Just sitting looking at the grass. Time flies when you are lost in empty thoughts. I love grass.

Friday, October 19, 2007

A Week at Sabolich - Friday

Socket before cutting 1.jpg Socket before cutting 2.jpg

I reported at Scott Sablich on Friday at 1pm. They had been working solid the previous afternoon and this morning on finishing the prosthesis. They were not done when I arrived, but Bill showed me the socket before it had been cut down to size. I had chosen a burgandy pattern that deepened with the laminate and looked beautiful - it looked like a vase at an art gallery. It is hard to tell from these pictures, but it is a deep red. But would it fit?

About an hour later Bill came back with the completed leg. I tried it on and it felt great. Better in fact, than it had all week - and possibly the best fitting socket I have had. There were a couple little tweaks that I requested he made that improved it. It felt like a mocassin.

The rest of the afternoon was full of lots of walking and adjusting of alignment and C-leg gait control. At one point, I broke out in a clammy sweat and lost strength - this is a chemo effect. I had to rest, but wanted to press on to get it as good as possible. I have to live with this thing.

By 5:00, we had done all that was possible given my strength (and the fact they were closing!) There are a few remaining items - they are going to make a foam removable piece above the knee that will help fill out my pants. I chose for minimal weight, so in the normal mode - there is a space between the knee and socket. My previous prosthesis had this part filled in. I also may need to make a few more alignment tweaks. Typically, the alignment process involves at least one night of walking around a lot to see if it really working well.

So Bill & team pulled it off. He sent me home with a working prosthesis that I believe is my best one yet. I will return to finish up some of the loose ends, but this will be fine until then and is currently better than anything I have had in the past.

Nice work, Bill
Bill and Completed leg.JPG

Thursday, October 18, 2007

A Week at Sabolich - Thursday

Things really started coming together Thursday. The changes Bill made to the socket yesterday made for a really comfortable, solid fit. Close enough from which to cast the actual socket.

We spent some time evaluating the foot. I had been using one with an adjustable heel height to accommodate work shoes vs tennis shoes. This is a problem that I have always had. Once you establish the heel height, all shoes you buy must be close to that height. This is a particularly difficult problem with women. Nevertheless, I decided that while this amounts to awhat I call a "neat-o" feature. Sounds good in the showroom, but doesn't pan out to be solid in the long run. The adjustable foot just didn't compare with the solid performance of the energy restoring flex-foot.

Early Thursday afternoon , we were reasonably happy with the alignment, fit, and foot, and decided to go for it. Time to make it permanent. We may pull this off in a week, after all. Bill took the test socket back to the lab and they worked all afternoon on the permanent prosthesis. Tomorrow is the big day. If it fits well, I go home with a new prosthesis.

One new fad among us amputees is to get stylish laminate to protect the socket shell. We're Americans after all, so why not express ourselves instead of just going with the ho-hum flesh tone socket. It is interesting how prosthetics have developed in the past 20 years. When I first lost my leg, the emphasis was on making it "look real". The emphasis now is make it as functional as possible, and while you're at it, just make it look cool. Don't try to mimic God's design, which no one was able to very well in the first place. Instead, just be creative and go with what you have with some style.

Below is the box of sleeves from which I could choose. They were all snowboard and skull-n-crossbones and Harley styles. You can also bring a T-Shirt of your choosing to use as the sleeve. Since we had an afternoon to kill, Mike and I went to Hancock fabrics to see what we could find. I think the last time I was there was with my grandmother when I was about 12! Incidentally, my brother-in-law Mike is accompanying me here Thursday and Friday and will drive me back to Dallas. I don't think he expected to find himself in a fabric store.

Cool Prosthetics


Prosthetic Lab



Technician with my pylon/foot unit:

Technician painting laminate over my socket:

Sleeve patterns from which to choose:

Michael browses fabric at Hancock:

A Week at Sabolich - Wednesday


This is the room they call "home". Every patient who is here for an extended amount of time is assigned a home where all the work is done, but also where they can sit comfortably while the prosthetist is back in the lab. Another feature of this place is the length they go to make you comfortable during all the waiting. The couch is good for napping. (For those who are in between chemo appointments!)

Wednesday was a day where we went several steps forward, one step back, and got stuck on another step. Bill went through a few rounds of adjustments on the test socket. We were experimenting with a vertical concave channel down the right side of the socket. The idea was to increase the stability of the femur at the point during gait just after I step down. I have never had much stability at that point, but I started getting it with his adjustments. The last stage, however, it was apparent that we went to far (We're talking fractions of an inch here). With the last small adjustment, all the sudden problems cropped up in other areas of the containment. "Everything affects everything else," Bill reminded me. When I left, it was not fitting very well and he assured me he could just "undo" that previous step. (ah, if this process could have Emacs' ctrl-shift-_) We'll see in the morning. It's still uncertain we can pull this off by Friday.

On another front, the computer was acting up and we were not able to talk to the knee via blue-tooth. Nor via the old-style USB cable (where Bill walks along side me holding the laptop tethered to the knee). Nothing seemed to be working with the computer. Whatever was wrong seemed to be infecting everything - their internet connection in the building got slow, and other patients C-Leg's stopped talking to the computers. I was recruited ("nerd in the building!") to help out and I could not figure anything out. COM ports, USB drivers, device manager, blah blah blah. It is remarkable how whether you are designing televisions or working on fitting a prosthetic socket, all the problems come down to Microsoft.

So all the fitting work we did Wednesday was not ideal because while you are adjusting the fit, you also need a good gait. All parameters have to be tuned together. So we did the socket adjustments while being stuck in one place on the gait. It wasn't too off, so we made good progress. The Nerd Herd guy is coming in Thursday morning first thing. Hope he can figure it out.

The laptop-to-C-Leg setup

Tuesday, October 16, 2007

A Week at Sabolich - Tuesday

Bill_with_test_socket.jpgTuesday morning, Bill unveiled the test socket. Bill Ethridge has been my personal prosthetist for about 15 years. His experience and instinct about what will work well and what will not amazes me. Prosthetics requires an incredibly diverse set of skills - anatomy, bio-mechanics, mechanical engineering, material science, and general tinker-and-fix knowledge.

I travel to Oklahoma City because of Bill. And because he is part of a large team of prosthetists like him who collaborate and persist until I leave with the perfect fit. Sabolich combines a rare combination of three ingredients - prosthetists with decades of experience, a sizeable team that collaborates at key points in the fitting process, and a culture of persistence until the client is walking as best as everyone involved believes possible. There is no hint of the time-is-money undercurrent that I have found at other places. And a new prosthesis is so expensive that I believe it is unwise for me to risk going anyplace else. So I keep coming back to Bill.

"You're not planning on retiring anytime soon?" I asked him (as I always do when I come up here).

"Not if my wife has any say in the matter," he replied.

So Tuesday morning, the test socket was remarkably good for a first try. First I tried on just the socket to see if we could even get it on and ensure reasonable snugness. It was. Then he put it on a brace so I could try it while standing. We discussed all the interior contours and lip of the socket. The test socket is see-through so that you can see the pressure on the skin. The material is a rigid plastic that can be heated and reformed, to a degree.

We went through a few such adjustments of the test socket. Each heat-reshape-cool trial takes about 45 minutes. After the first try, he connected it to a C-leg knee for a bit more realistic set-up. We went through about three total shaping rounds.

In the end, Bill decided we would create another test socket. The outer hip area had more space in it than could be accommodated by heating and reforming. So he scribbled some more markings on the socket, and sent me on my way. He spent the remainder of the afternoon creating test socket #2 and it should be cooled and ready in the morning.

test socket with bracket (no C-Leg yet)

quick-adjust connector

floor spacers - used to quickly assess and adjust height

test socket with C-leg setup

A Week at Sabolich - Monday

Old_leg.jpgMonday morning I arrive at Scott Sabolich prosthetics. They will attempt to craft a prosthetic leg for me in the period of a week, although normally it takes about two. I will not be getting a cover, so that will reduce the time somewhat. I have chemotherapy treatment for cancer next week, so if we do not finish by Friday, I will have to return to Oklahoma City another week to finish up.

Step one is to get a ballpark socket from which the entire prosthesis is built. A perfect fit is critical. It does not matter what high tech componentry you have unless the socket is well-designed. The socket is the technology-to-human interface. Software designers are growing in their awareness that interface is everything. Prosthetists have known this for decades. It must "fit like a glove."

In my case, we must make a choice. I have gained weight since 2002, when my current socket was fitted. So we cannot simply duplicate it. There are two options in our choice. The first option is to make a cast of my residual limb, with firm plastic forms pressed against the plaster in certain places as it firms around me. This is messy and has much room for error. But it is based on reality - you are casting what the socket will actually fit. The second choice is to make a cast of the previous socket, take some tape measurements of my residual limb, and then allow the prosthetist to artfully add volume where he believes it is most appropriate. Regardless of the option we take, the goal is the same - to get the first test socket as close as possible to the final, so that the number of trial-and-error iterations will be as small as possible.

We decide upon the second choice. So Monday morning, they take my prosthesis and fill it with plaster. The form is then used to make the first test socket. This will take them the afternoon to work on and it must dry overnight. So after a short morning visit at Sabolich, I get to leave for the day.

In my case, I took an all afternoon nap. I am weak and not feeling well from my chemo and need to strengthen for the week to come.

Old Socket

Monday, October 15, 2007

A Week at Sabolich

Creek.jpgMy name is Greg Hewlett and I am an above-knee amputee. I lost my leg in 1984 to osteosarcoma, a form of bone cancer. I swapped prosthetic providers often at first, wanting to find the best prosthesis possible.

I was in an amputee tennis tournament back in the late 1980s and got crushed by this guy. I asked him where he got his leg and he smiled and told me he was a prosthetist. His name was Bill Copeland and he worked at Sabolich in Oklahoma City. I decided to go to the trouble of traveling from Dallas to get my next prosthesis with Bill. The work he and his team did was outstanding. Even though he moved and no longer works there, I stayed with the Sabolich team and still insist on getting my leg there, no matter where I live. And I have since lived in Houston, Dallas, Boston, Philadelphia, and Colorado.

Many people wonder why it takes so much work and so much time to put together a good prosthesis. So I created a diary to cover the time I spent there getting my recent prosthesis fitted.

For amputees who want to know what to expect from the fitting process, or who who want the best fit and best prosthesis possible, I hope this helps. For those who are just curious, I hope you find this interesting.

As a side note, I am also fighting cancer (a different cancer than the bone cancer of my youth), thus there are some references to my treatment in the diary.

A Week at Sabolich:

DAY ONE - Monday
DAY TWO - Tuesday
DAY THREE - Wednesday
DAY FOUR - Thursday
DAY FIVE - Friday

Other stuff
C-Leg Folklore
Peg Leg Blues
Fetterman Crutches (where I get my custom forearm crutches, which are excellent)

Thursday, October 11, 2007

New C-Leg approved!

Hard to believe. After wrestling with Blue Cross Blue Shield of Texas since November of last year, including a number of rounds of correspondence and appeals, and even trying to change the law, I was approved to get a new prosthesis with the C-Leg microprocessor knee. (Here's a cool graphic of the new design)

I've been limping around on my old one and it really affects my ability to do the walking needed for recovery. And it would be really great for me and Christine to take a walk together!

I'm really in no shape to go through the process - it takes 1-2 weeks and requires physical preserverance and patience as there are many rounds of reshaping of the socket, tweaking of the alignment, etc. But my prosthetist and doctor believe that the benefits to me will be so worth it, that I'm going to do this in my chemo off-week. If we finish, great. If not, I'll just pick it up another off-week.

I would have never out-lasted BCBS without the extensive perseverance of Peggy at Sabolich, the generosity of Scott Sabolich and team, who generously gave me a loaner knee for all this time, Dr. Shapiro and Cathy at Texas Cancer Assoc, and Dr. Oeffinger at Sloan-Kettering. (Read about his unique program for long-term childhood cancer survivors)

C-Leg and Dolce.JPG

Wednesday, October 10, 2007

The report and plan

Greg_blogging.jpgI never reported here the report and plan, so here is an update.

- My July 23 3-month remission check-up revealed 2 lymph nodes that had grown relatively quickly (to 2.2 and 4.0 cm) as well as a small lung nodule

- The plan was to aggressivly pursue chemo (FOLFIRI protocol), then check after just a few rounds, to not put me through too much without having some indication whether it was working.

- After three rounds, I had a scan, which brings me to what I have reported so far.

- The scan after those three rounds (scan was two weeks ago) showed the lung nodule shrunk, but the 2.2 went to 2.7 and the 4.0 showed "slight increase". Recall that CT slices are .5 cm, I believe, so everything is +/- some uncertainty. The chemo has slowed things down, but we'd like a reversal.

- The plan was to continue the chemo - "not enough response either way to really tell." Also, we are adding Avastin to the recipe (Tee "FOLFIRI+Avastin" protocol). After 3-4 more rounds, they'll check again and maybe continue or change to a new chemotherapy approach (I've got one, maybe two more drug rotocols I have not received).

- At my initiative, I continue to bring up surgery and my surgeon has said he is not ruling it out. But I cannot tell how likely it is he will do it. Surgery is the only known current medical approach to get rid of it completely. But due to lymph node activity, they suspect a liklihood that after surgery, more can simply pop up. Like a very painful and risky process of whack-a-mole. And they cannot remove all lymph nodes preemptively, as that will cause a lymph node system backup. I actually prefer to keep playing whack-a-mole, enjoying extended life and continuing to try new treatments they come up with, hoping for the long shot that we finally get that last piece.

- So without delay, they kept me on the chemo with added Avastin. The chemo is administered for 48 continuous hours at 14 day intervals.

- Yesterday I began my second round since the scan (fifth since July 24). I am currently hooked up to the pump, which I take home with me.

- We'll do a few more before re-scanning.

- I am generally quite weak and feeling sick all the time. That is not to say I am always down emotionally. I am enjoying very simple things - reading, limited interactions with friends and family, and spending time with Christine. I have not been able to work as much as the past in the "good days."

- Many of you ask if I am able to work. I am doing so a little - about a day a week on average - not as much as during treatment in the past. I'm eating up my disability pay, but that is rarely on my mind - too far down on the care-about list. My managers are patient and adaptive and continue to work with me however possible so that I can best contribute with the resources I have.

Thursday, September 20, 2007

Tyler on the Run


Tyler is running the Houston Marathon for the American Cancer Society. Run hard, brother. (And send me a pic at the finish line!) If you're interested in supporting him, read on...

Dear Friends,

I am raising money for the American Cancer Society by running in The Houston Marathon on January 13, 2008.�� This a very important cause to me as I have a number of friends whose lives have been affected by cancer recently.� I'm sure this is true of many of you, as well.

I'm writing today to ask for your help by making a contribution to the American Cancer Society using the link below to donate online quickly and securely.� You will receive email confirmation of your donation. �

My goal is to raise $3000 for this great cause.� Thank you for your consideration.


Tuesday, September 18, 2007


At 6:45 am, I walk into the doors of MD Anderson Cancer Center. I and thousands of other patients. It is important that we arrive on time, so that we can wait. We must be calm and ready when the staff calls. We sit in our respective stations to be tested, scanned, infused, radiated, probed, cut, examed, questioned, and/or told if we might live. Currently, I am in a small quiet corner of Waiting Room B of Diagnostic Imaging Center C in Building R. I am sitting next to a fish tank. Many fish work at MD Anderson. They are part of the social services/psychiatry department. They keep us calm.

Fish workers with patient 169996

I am sitting next to my friend Mark. He is enjoying banana bread. I am fasting for the scan. No bread for me or the fish.


Monday, September 10, 2007

Round three begins

GregChemo.jpgI'm sitting in the chemo chair taking round three. Round two went better than the first round - they gave me a different coctail of pre-meds before the chemo. That seemed to dampen the blow better.

Next week, I'm likely going to get a CT scan to make sure the chemo is doing something in order to continue. I'm just going to go down for the scan and come back and discuss the result with Dr. Shapiro here in Dallas. The reason for doing it at Houston is for comparative purposes with all the historical scans in their system.

I'm starting to feel the chemo now. Gonna feel crummy for a while.

Saturday, September 8, 2007

Buzz It

Suddenly, the Texas summer air feels a bit cooler.

Wednesday, September 5, 2007

$19,134; or Why health care coverage matters

What is... one round of chemotherapy in FOLFIRI protocol for colon cancer treatment.

Tuesday, September 4, 2007

Imaginary things

Of all of the theorems, formulas, transforms, and properties I have attempted to understand in math and science classes, one continues to fill me with awe: Euler's Identity. Every couple of months in my work, I sit back and sigh in wonderment at the ring of truth associated with some aspect of it. A colleague and I will be at the white board and some facet of it will emerge, and one of us will say, "Isn't it amazing?" For me, it delights more than E=mc2, Pyhtagoras' theorem, or many of the other gems that have emerged in the history of the discovery of truth.

In its simplest expression, the identity states that e to the power of pi times i equals -1. It magically combines the three most mysterious constants conceived, or rather discovered, by mankind:
- e: the constant, the derivative of which, when raised to x, is 1. e is not representable by decimal numbers, but is close to 2.72.
- pi: the constant equivalent to the ratio of the circumfrance to the diameter of a circle. pi is also not representable by decimal numbers, but is close to 3.14.
- i: the imaginary square root of -1. i is not only not representable in decimal numbers, it is so beyond imagination it seems plain silly.

The identity is, at the same time, beautifully elegant and laughingly non-sensical. It seems surely to have been fabricated in the wishful thinking of a naive, wanna-be mathematician.

This odd identity regularly bears fruit in engineering. In my particular branch of engineering, it allows us to get a grip on images, audio, and video in the frequency domain. While we experience life in the space-time domain, the frequency domain allows us to "see" things from a perspective that enables things impossible when looking through space-time. It allows us, for example, to compress images into small fragments that can fit on camera cards. It allows cellphones to talk to one another through the air. It allows us to cram hundreds of albums into iPods. It allows us to simultaneously put hundred's of TV channels on a single thin wire. It allows an MRI to see tumors without cutting. It is what made the Speak-n-Spell speak. And it allows us to make DLP video the best picture in the world (ok, so I'm biased).

When I speak of how it inspires awe (and even joy?), many of my nerd friends know what I'm talking about. If you have experienced this, or are curious enough to want to, then I think you will appreciate Amanda Shaw's latest essay in First Things blog.

Friday, August 31, 2007

Julie published

My sis was published in the San Fransisco Examiner yesterday. Sorry they're taking away your puzzle, Ju. Whatever will you do?

Letters: Aug 30, 2007
Pining for old puzzles page

For a newspaper representing America�s most anti-war city, you sure know how to start a war on your faithful readers. Mr. Know-It-All may know it all, but he will never compare to my daily dose of Will Shortz! Take the Sudokos and Kakuro, but please bring back The New York Times Crossword Puzzle.

Julie Burck

Tuesday, August 28, 2007

iPhone Hacker first tried DLP

A teenager named George Hotz made big news this week when he announced that he hacked into his iPhone to get it to work on Sprint network (The iPhone is hard-wired to only work with AT&T). I find it amazing a high school student could pull that off. He ended up trading it to a cell phone repair company for a new car and three new iPhones.

dlpGoesDown.jpgSo what was George's last project? In the spring, he hacked DLP. "DLP Goes Down". It is a lot of fun to read about a guy trying to re-engineer your own team's work. From his blog, it didn't seem like he got far enough to actually drive the DMD differently. Still, admirable work. I'd like to meet the guy.

Chemo update

I finished my first round of chemo and yesterday began my second.

The first round was pretty bad. Better than the last round in November but worse than the typical first round. They used less pre-meds to prepare my body because that is the normal protocol for the first round. The problem, I think, was that I still have toxicity from all the treatments from before. So the chemo hit me like a truck and they had to stop it for an hour and give the pre-meds and let my body recover before giving me the rest. I think the trauma from that affected me the rest of the week.

Yesterday, however, to begin the second round, they gave all the pre-meds, as well as an extra relaxant to make me drowsy throughout it. (Maybe to keep from from complaining?) My body seemed to do pretty well. That seemed to get me off on a better trajectory this week.

I miss everything. People, work, friends, enemies, chores, traffic, church, taste buds, wine, sushi, Fry's.

Sunday, August 26, 2007

Handcrafted in Texas

incisions.jpg CollingsArchtop.jpg

Dr. Wayne Hofstetter double thoracotomy.
MD Anderson, Houston, Texas
Medium: Greg Hewlett

Bill Collings Archtop Guitar
Austin, Texas
Medium: Maple
(not painful)

Peg Leg Blues

pegleg.pngMy YouTube activism has seen a little attention:

Taking it Off the Streets: Activism Goes Online

New Media Activism

You Tube Activism

ACA: "...pulled out all the stops."

Sunday, August 12, 2007

Full throttle ahead, tank on low

Quick update:

After more discussion this week with my oncologist, we've decided to move forward with chemotherapy to attempt to control (shrink!) these two lymph node tumors. The PET scan this week confirmed they were cancerous. They are in the center of my chest near where the windpipe splits into a branch for each lung. Three times we've seen an inoperable situation followed by chemo response that surprised the doctors. We need a fourth.

Chemo begins tomorrow. Christine puts it this way, "the tsunami is coming Monday." Dripping starts at around noon. Please pray that these tumors will respond and that the door will open up for surgical removal. Also for our strength.

Tonight, Christine and I are going out - to celebrate life.


On another note - send your Simpson avatars this week to be included in the group shot!

Friday, August 3, 2007

Update and thanks

Christine and I are still making decisions about how to move forward. we're facing tough choices.

As I think back, this is the fourth time since June 2003 that I've been told they could not operate. It is good to think back, because it gives me thanks to the Lord for my miraculous survival. I tend to forget just how dire things looked in the past. The first three times surgery was not an option, chemo was surprisingly successful and opened up a window for the surgery. Earlier this week, I received an email reply from my lung surgeon and he indicated that surgery "is not out of the question", but not an option now. However, I'm still trying to find out just how realistic surgery is and what needs to happen. This time sounds different. This pulmonary lymph node involvement is more serious than nodules in the lungs.

For those of you praying, I want to thank you for your continued faithfulness. And we have been encouraged by all your comments and emails. It is clear to me that "we haven't given up on you".

Do you know this couple?


You can Simpson me, too (here's another way to create your character). If you do, email the image to me and I'll post those I get by Aug 15 in a Greg's Place gang shot. Send the full body shot of your character, not just the head-and-shoulder view.

(Is there a photoshop-adept volunteer who can put together the group picture with all the resulting images?)

Thursday, July 26, 2007

Cancer is mean

Today did not go so well. The scans showed two relatively large lymph nodes by the trachea "Y". The cancer is spreading. These were normal just three months ago. Due to the quick growth and size, Dr. Eng said they are inoperable. I'd like to confirm with the surgeon, but surgery does indeed seem difficult given their location and instability. She wants to move right away to aggressive chemo to fight them. I may get a biopsy or PET scan back here in Dallas for more confirmation, but she and Dr. Rodriguez were pretty sure what we're dealing with. I'm going to make some calls tomorrow to better understand things. But it doesn't look good.

There was also a tiny lung nodule, like the other six I've had removed. By itself, it is not a big problem, and could be resected like the others were. That is not the focus of attention right now.

So how am I doing? Let me illustrate to you my mindset. After meeting Dr. Eng, I spoke with Christine on the phone (she stayed in Dallas due to her condition) and decided that I really wanted to go back today to be with her, even though she thought maybe I shouldn't drive after that greuling day. I walked out the hospital door, picked the car up at the valet, and started driving. And driving. I drove about a fifth of the way to Dallas before I realized I had left my suitcase, laptop, and everything else back at the hotel. I had to turn around and go get it all. Then drive the same route again, only this time in heavy traffic, to creep back towards Dallas. Frustrating.

Tuesday, July 24, 2007

Trouble with scrubs

The CT scan, as usual, leaves me in poor shape for gastrointestinal reasons I will not go into here. Today, they said I didn't need to change clothes. I could keep the scrubs top, because I am staying at the Rotary House, a hotel connected to and owned by the hospital. I could just return it at the hotel.

This top is a loose fitting shirt they give you for the scan, but is also like those worn by surgeons and other folks at the top of the complex political hierarchy of MD Anderson staff.

Well, it so happens that the Rotary House is in the walking path from the hospital to the staff parking and public transportation. So as I milled about today in jeans with my scrubs top, I was seen by hundreds of hospital employees streaming by. Normally, I am pretty much invisible to them. But today, I was getting eyed over a bit. As the day went on, I noticed it a bit more. The looks were more like awkward glares than curious glances. I ignored it, thinking that I was just being self-conscious with impersonator guilt. Or maybe they thought I was shop-lifting their clothing.

It all became clear in the parking garage tonight. A nurse, whose age and step indicated high status and experience, was walking towards me in a direction closer than comfortable. She reached out, pinched my leg, and reprimanded me "Tsk, tsk, Doctor, you know better than to be wearing jeans!"

The good side of brain tumors

Cancer can be a funny thing. I got news last week of a brain tumor and its the best news I've heard all year. Let me explain (don't be alarmed, it is not malignant.)

I have had a tumultuous three months since my last appointment at MD Anderson. I had left that appointment looking forward to a three month doctor-free, news-free, worry-free break.
As the weeks went by, my fatigue did not get better. I have had a general feeling of malaise and I had expected to begin returning to full health. Upon my good wife's pleading, I reluctantly went to the doctor to discuss the fatigue. This led to some blood work that revealed a high calcium level. This is very uncommon - the body does a great job of keeping calcium levels normal. It could only be aa few things, one of which was not what I wanted to hear. High calcium is often a sign when someone's cancer spreads to the bones, which mine can do. The tumors can dissolve the calcium in the bones. After a long week, which included a full-body bone scan, I found out that there is not metastatic bone activity, but that my parathyroid is not regulating it correctly - a problem, but not a big problem.
Two weeks later, the doctors office calls and says that in blood work I had done during that scare, four hormone levels were far out of range: from 10x too low to 10x too high (not sure why they didn't call for two weeks!). This pointed to the pituitary gland - in the brain. Again, my heart sunk. It sunk down into my stomach, and down through my radiated, butchered intenstines, and I think it didn't stop until it was somewhere in what's left of my colon.
They wanted to do a brain MRI. All indications pointed to something physical going on up there between my eyes. It might explain the strength problems and malaise. But the possibilities were not many. The best it could be is a benign tumor in the brain - a "pituitary adenoma". The worst would be that the colon cancer had spread to the brain, as it does in 10% of stage IV colon cancer patients. The benign tumor could be removed surgically. Brain surgery. I can do that. No problem. Bring it on. Just don't say the C word.
Again, the long days. I had a brain MRI. I saw the technicians behind the glass intently pointing at the screen and talking (but they could tell me nothing). And for two days, a chill whenever the cell phone rang. The call came. The MRI clearly showed that I had the benign tumor in my brain. Relief and joy. Funny thing.
The news got better. The endocrinologist is going to attempt to treat it with medication instead of surgery. I didn't know that was even an option. A little pill two times a week. And it just might be the ticket to bring back my strength. I have had more than one occasion in this journey when things seem so dire, and the scope of the possible spans from bad to worse. And then, I find out they are better than what I could imagine. Eph 3:20-21 surely refers to more than mere MRI results, but I know it does not mean any less!
So here I am back in Houston after my three month "break". Two other times in the past four years I have had a three-month break and the break ended with new "spots" and more treatment. I get a full-torso CT scan today and meet with Dr. Eng Thursday. I am weary, but at rest. (Mt 11:28)

Wednesday, July 11, 2007

Medical Summary - updated July 23 2007

I have stage IV colon cancer, which means that there is a primary tumor in the colon and it has spread via the bloodstream to another place. In my case, at the time of diagnosis, there was a very large tumor on my liver. In addition, there was possible cancerous activity in the local lymph nodes and two small places in the lungs. Neither of these latter two problems were certain (although later proved to be cancer and were removed).

What I've done so far:

(1) To start things off (June 2003), I had almost three rounds of chemo. Each round consists of a 21 day cycle of chemo. Day one, I take intravenous CPT-11 (ironotecan). Days 1-14, I take Xeloda, the oral form of 5-FU, in the morning and in the evening. These three rounds shrunk the liver tumor almost 50% and made the lung spots go away. This was very encouraging, as this chemo is effective in only 50% of colon cancer patients.

(2) The third round was aborted due to colon obstruction at the tumor site. I spent a week in the hospital in Dallas before it opened just enough to get by for a few weeks.

(3) Then I had surgery to remove the primary tumor. Dr. Rogriguez, surgeon at MD Anderson Cancer Center (MDACC) performed the helicolectomy, a removal of the half of the colon containing the tumor. In addition, he removed the surrounding lymph nodes, a few of which turned out to be cancerous. While I was opened up, he also looked around for cancer that had not shown up on the radiology tests. He found no other visible cancer. The removed tumor was analyzed and found to be only 20% viable due to the effectiveness of the chemo.

(4) After recovering from surgery, I began chemo again. One day shy of having completed two more rounds of chemo, I developed clostridium difficile bacteria in my bowels. This was treated during a three-day stay at a local Richardson hopsital.

(5) After complications due to the onset of c-diff bacteria, I was delayed a few weeks. Dr. Hoff decided it was about time to do another round of radiology tests and we received the results on Dec 8. To everyone's surprise the tumor had shrunk remarkably and it was determined the next week by the surgeon, Dr Vauthey, that I was ready for surgical resection. MD Anderson's approach to liver resection for colon cancer is described in the article.

(6) The surgery was performed on Dec 22 and I spent Christmas in the hospital. I had quite a group with me during this time. According to the surgeon, it went "perfectly": the tumor was removed in one piece (all the right lobe and part of the left), there was no need to remove any of the diaphragm, and most importantly, there was no cancer found beyond that which was taken out. Christmas, it seems, came anyway. The recovery is rough, as I had 76% of my liver removed. But I am steadily regaining strength as it regenerates.

(7) Having gone through surgical removal of the liver tumor, more chemo (possibly with a different drug) was necessary for good measure to assure ourselves that all remnants of the cancer are gone. I completed this round in spring of 2004.

(8) At the end of spring, they noticed a small nodule in the pelvic region. They tried to biopsy it via a colonoscopy, and the samples taken were negative for cancer. Three months later, it showed growth, so they did an external biopsy, which proved positive for cancer. They also noticed that this nodule may have been on the original scans back in 2003. I think it was there all along.

(9) They decided to do a different type of chemo, which is now the frontline approach (it wasn't FDA approved when I began all my treatments). This protocol is called FOLFOX with Avastin. After several rounds of this, the nodule shrunk, so they were willing to go after it with surgery.

(10) In February of 2005, I had major surgery to get this nodule taken out. They sucessfully got it, and saw no remaining cancer anywhere in my belly when they were in there. The surgery was miraculous in that the side effects were relatively few, even though many bad side effects were quite possible and even expected - including removal of my bladder or rectum. None of that was necessary!

(11) There was a very small (less than 1mm) margin of non-cancerous tissue around the edge of the the removed blob of tissue. This means a good chance there are still microscopic cancer cells left. So they decided to do 4 rounds of chemo (FOLFOX-Avastin), then radiation, then a final 4 rounds of chemo.

(12) The radiation was completed July 5, 2005. I did the radiation in Houston at MD Anderson.

(13) After radiation, they wanted to do some more chemo for good measure. So I did four rounds of FOLFOX-Avastin, finishing in September 2005.

(14) In October 2005, the CT scans were clear(!)

(15) Jan 2006 I had my first 3-month checkup, which inluded a full torso CT scan. There were a couple of spots that showed up on the scan on my lungs. These had been there before but had disappeared (with chemo?). They were too small to know what they were. Dr Hoff suggested that I return in 8 weeks for another scan of the lungs.

(16) March 23,2006 a couple days after the scan I met with my new oncologist, Dr. Cathy Eng (Dr. Hoff moved back to Brazil, his home country). Unfortunately, the scans showed significant growth of the spots and several others as well. The largest is 11mm, just big enough to biopsy. So we are scheduling a biopsy - probably around April 17.

(17) April 7, 2006. The biopsy was positive for cancer. Details here. I am now taking a four rounds of irinotecan + intravenous 5fu, fourteen days per round. The story behind this protocol decision is here. The hope is to shrink and kill. I'm hoping surgery will become an option to remove the lung mets.

(18) May 22, 2006. Due to low white blood cell count and intestinal pain, probably from the chemo iritating them, my doctor postponed round three of chemo for one week.

(19) Nov 11, 2006. I finished my last round of chemotherapy. All these years of chemo is really beating me down. I requested a consult with a lung surgeon. To my surprise, he told me I was a good candidate for surgery. (details) Lung surgery to remove the mets in my left lung is scheduled for Jan 5, 2006.

(20) Jan 5, 2007. Successful lung surgery, left lung. I had thoracotomy with two wedge resections to take out two mets in my left lung. The surgeon expects to do a similar operation on my right lung in a couple months. You can follow my surgery by looking at blog entries from January 2007.

(21) March 23, 2007. Successful lung surgery, right lung. I had another thoracotomy, this time with four wedge resections to take out mets. Surgery details are in blog entries from March 2007.

(22) April 19, 2007. Met with my surgeon, and my clinical oncologist, Dr. Eng, at MD Anderson. No evidence of disease, no treatment planned. Return July 24 for CT scans. This feels like the first remission, although it actually is the third. The first was tentative where there was something on the CT scan, but the biopsy was negative for cancer, but was done "blindly". The second remission was with the knowledge that there were (likely) lung mets that had shrunk to not be visible on scans. This time - no trouble spots.

All of this is done under the care of a team of doctors at MD Anderson Cancer Center (MDACC) in Houston, TX.

Sunday, May 27, 2007

Miss Jane said no

I regret to inform you that the SB23 conference committee said no to amendment 16. In fact, in their report, they stripped the bill of all amendments before passing it back on its way to become law. Texan amputees will be singing the Peg Leg Blues for a couple more years. We'll have to try again in '09.

Friday, May 25, 2007

Peg Leg Blues

Prosthetic Parity in Texas

Here (10 Minutes to make a difference for prosthetic parity) are more specific instructions today on how you can help passage of SB23-amendment 16. This info comes last night from a rep of the American Coalition of Amputees.

Bottom line, there are a few switchboards, that if they get lit up today, can cause this ammendment to pass.

Thursday, May 24, 2007

If you live in Texas...

This is a political request for Texans, particularly for those who live in Denton/North Richland Hills/Flower Mound/Grapevine area.

There is a health care bill in the works in Austin right now that has an amendment that would help me and my fellow amputees. It addresses the practice where insurance companies say they cover prosthetics, but when the patient loses a limb and looks into the details often they find out,
(1) There is an unreasonably low cap on prosthetic components, lower than other comparable medical services, OR
(2) There is only coverage for one prosthesis in a lifetime, OR
(3) There is only coverage for components that are decades-old technology. Like walking on a 1967 Impala.

I have been fighting my insurance company since January for them to pay for a knee repair (I am currently on a "loaner" knee generously provided by my prosthetist). My problem is that I am on new technology. (which so happens to be the same as that given wounded soldiers at Walter Reed). Their policy leads to the only solution being that I get an entire new leg with old technology, the kind I had until 2002. I fell far more frequently on the old style and it required more effort to use.

This law will directly address my issue and similar ones I and many others have faced. It holds insurance companies to their word to "cover prothetics" in a meaningful way so consumers are not surpised to find out what they were (not) paying for. It defines prosthetic coverage to be the same as Medicare standard and gives doctors the authority to discern which components are necessary. Similar bi-partisan legislation has passed in Colorado, California, NH, and a few other states.

The House version passed with this amendment, but the Senate passed the bill before it was added. A joint committee is meeting (likely today or tomorrow) to hammer out the differences before sending it to the governor. The joint committee chair (and author of the original bill without the ammendment) is Sen Jane Nelson.

If you live in Texas, particularly in her district, and are behind this amendment, it would help if you simply called her office (512 463-0112) and tell the aid who answers that you urge Sen Nelson to concur to ammendment#16 of SB23.

Thursday, April 19, 2007

No more treatment planned

A quick uneventful trip to Houston resulted in some good news. Dr. Eng decided that there is no good reason for chemo right now. That's right, no chemo. No radiation. Nothin but healing. Til July 23, when I go back for a scan.

Her reasoning - we have not seen anything suspicious on the scans in over a year except the lung mets that Dr. Hofstetter took out. And I've had a significant amount of chemo during that time. So she's putting me on the wait-and-watch protocol (that's the medical term for it, I think).

I'm trying to comprehend this. This is new territory for me.

Wednesday, April 18, 2007

What's next

As the pain fades from my previous lung surgery, my mind turns to the next item on the agenda. The odd thing is that there is none. No more "trouble spots" need to be dealt with. I feel like I'm a space walker floating out where I should not be. I am thankful. And I do trust that God has somehow brought me here in his wisdom, but part of me does not feel completely safe. I wish I were back on earth.

Tomorrow afternoon I meet with my surgeon and my general oncologist. What will they tell me? Will they suggest more chemo? After all, they still believe the chances are high that there are still small mets out there that haven't yet surfaced. But even if there are, chemo may not be the best choice right now. At the same time, they have expressed some hope that this could actually be it; that they've pruned the last bugger. That is my prayer.

We'll see what they say.

Friday, April 6, 2007

Some hospital pics

Some more pictures from the surgery...

Here is the bong I got to smoke daily after surgery:

Release! John and I out front of the hospital getting that first breath of wonderfully humid Houston air, four days after the lung surgery:

Nils, John and I at Goode Co Texas Seafood shortly afterwards. This is one of my favorite spots in Houston. We were in great spirits as the surgery had gone so well, and I was in relatively low pain :

Tuesday, April 3, 2007

Doctors, nerds, and pneumonia

Things have been going great. I am still in disbelief about how small the pain is this time compared with last. I still have discomfort and some difficulty sleeping, but this is nothing compared with last time.

One issue, however, was that my chest tube incision was still oozing this weekend. I went to the ER at Richardson hospital Saturday night because it had become greenish and this could be due to a problem with the air pocket. As I walked in the door, I was confronted by a packed room full of crying and coughing. This was not the place I needed to be. I immediately left and called the surgeon on call at MD Anderson. He agreed that I should not be in an environment like that for six hours, but that I did need to get this checked out. He recommended I go to the local urgent-care-ER facility first thing Sunday to get evaluated and get an x-ray, which I did. I was bummed to miss worship with my friends, but hey, there's always Easter(!). The doctor examined the xray and saw that my lower right lung seemed to be developing early stage pnemonia - not good. The on-call surgeon said I'd probably have to go to Houston to see my surgeon. And they put me on antibiotics.

To speed things up and get better info to my surgeon in Houston before driving down, I wanted to send the x-ray images electronically to MD Anderson. The urgent care places said they did not have the capability to send images electronically, but gave me a CD that the xray machine spits out. The CD was an autorun diagnostic image software with unrecognizable image format files. And it was huge - 30Mbyte. The doctors and nurses at MD Anderson aren't computer geeks, nor are they patient with computers, even if I could send them a bunch of raw files. So I called up my high tech Houston buddy Nils and we came up with a plan. I copied the CD directory structure onto a temporary ftp server Nils set up on his home PC. Nils then burned an exact duplicate CD, which he delivered to my surgeon the next morning. No FedEx needed. Pretty cool, huh?

Long story a little longer, Dr. Hofstetter evaluated the x-rays and determined that this should be fine on its own and that there is no need to go to Houston. So I'm happy at home and back on track recovering.

Minor complication

Things have been going great. I am still in disbelief about how small the pain is this time compared with last. I still have discomfort and some difficulty sleeping, but this is nothing compared with last time.

One issue, however, was that my chest tube incision was still oozing this weekend. I went to the ER at Richardson hospital Saturday night. As I walked in the door, I was confronted by a packed room full of crying and caughing. This was not the place I needed to be. I called the surgeon on call at MD Anderson and he recommended I go to the local urgent-care-ER facility first thing Sunday to get evaluated and get an x-ray, which I did. That doctor saw that my lower right lung seemed to be developing early stage pnemonia - not good. The on-call surgeon said I'd probably have to go to Houston to see my surgeon. And they put me on antibiotics.

To speed things up and get better info to my surgeon in Houston before driving down, I wanted to send the x-ray images electronically to MD Anderson. The urgent care places said they did not have the capability to send images electronically, but gave me a CD that the xray machine spits out. The CD was an autorun diagnostic image software with unrecognizable image format files. And it was huge - 30Mbyte. The doctors and nurses at MD Anderson aren't computer geeks, nor are they patient with computers, even if I could send them a bunch of raw files. So I called up my high tech Houston buddy Nils and we came up with a plan. I copied the CD directory structure onto an ftp server Nils set up at his home PC. Nils then burned an exact duplicate CD, which he delivered to my surgeon the next morning. No FedEx needed. Pretty cool, huh?

Long story a little longer, Dr. Hofstetter evaluated the x-rays and determined that this should be fine on its own and that there is no need to go to Houston. So I'm happy at home and back on track recovering.

Tuesday, March 27, 2007


Another quick update. I am being discharged. The pain is far better than last time. In fact, I am on the medication I was on at weeks 3-4 of the same surgery in January! Hopefully, this means quicker recovery in terms of time back to driving, sleeping laying down, working, being mobile and able to use my arm, etc.

I did have a complication today. Some air got into my chest cavity today when they pulled the chest tube. Thus, I need to come back in tomorrow for an x-ray to see if it is stable. So I am out of the hospital, but not released to Dallas yet.

Likely leaving the hospital today

Quick update -
The lung leak has healed. They just pulled my chest tube out and capped off my epidural. We'll know in about another hour how much pain I will have without the epidural and thus will need to combat with oral medication. If pain is under control this afternoon, I can leave.

Monday, March 26, 2007

Some pics

I've been having wi-fi troubles and have not been able to post pictures. Until this morning. Here are a couple.

Here is my traditional picture of the "first walk". It was taken on Friday night.


Early today, when this bustling institution was still quiet, I awoke and took my early walk. One of my favorite places to walk is this big atrium down on the second floor. It is full of plants and trees and, of course, the Starbucks coffee bar. The Park, as they call it, has outdoor furniture, so you feel like you've escaped the hospital. A good place for peace and thinking.


Sunday, March 25, 2007

Update from floor seven

The pain is turning out to be much better this time. I have a new bear, Sir Koff-A-Lot II. I am finding this go-around that it is not always necessary to grab for him to cough. Last time I had to squeeze him hard to even make it bearable. (again, no pun intended) Maybe this is the result of a good epidural, which is still in. But I do remember having much more pain last time. They say pain varies wildly and unpredictably when it comes to through-the-rib surgery. I'm thinking I may be having less severe nerve irritation than last time.

I am having one "common" problem - some air leakage from my lung into the chest cavity. Little bubbles that escape the lung into the cavity and out the drainage tube. Dr. Hofstetter says that will take an extra day or two to heal. Otherwise, the recovery as far as drainage volume is going better. In all, we're looking at probable departure time of Tuesday, or possibly Wednesday.

I am pushing (and being pushed) to walk many times a day and do the breathing and coughing exercises. I was told once by a nurse to treat surgery recovery in the hospital as work, not rest. You rest when you get home. That way of thinking has helped.

My lung and lunch capactiy are increasing.

Saturday, March 24, 2007

New Morning

Hi. Greg here.

The moment I awoke from surgery, I rejoiced. It is scary going under, as this surgery is serious enough that some don't make it through. I was reciting Psalm 23 in my mind as I drifted into the deep sleep and the next thing I know I was emerging from the valley of the shadow of death.

I hear that it went very smoothly. The surgeon estimated I only lost about 5% lung capacity from this surgery. And that he got all four mets. With nothing else on the CT scan, I am now, really for the first time in four years, clear of any visible signs of cancer. I don't know if they'll want me to take more chemo. Time is the only way now to find out if there is any more cancer. OK, I'm getting ahead of myself.

With the epidural working, this has been a completely different experience than last time. Carefully and calmly, they adjusted the medicine to get me comfortable. I came into consciousness gently. No screaming or hitting. By the afternoon, I was in my standard room up on the 7th floor. I was determined to walk and did so later that evening. I also got special permission, unlike last time, to eat. They say that with the anesthesia wearing off, eating can make one nauseated or even vomit. What do they know? I asked (begged?) the resident and he said OK. I ordered dinner, had a few bites, then threw up. Hmmm. Maybe there was something to that warning.

I didn't get much sleep from the pain, discomfort, and tangle of tubes running in me from all directions. The pain is not too bad; it is just there. This morning, the nurse rolled in her laptop station to show me an instructional powerpoint presentation on how to breathe. I watched then took the opportunity to write you all.

Thanks for your support everybody! And thanks, Mark, Rollin, and Christine, for the blog entries to keep everyone up to date.

Friday, March 23, 2007

Recovery Continues Well

So far, the first day post-surgery has gone well. Greg has been able to get up and walk around, and his pain has been manageable. No recurrence of the epidural problems from last time, thanks be to God.

Please continue to pray for Greg's recovery, for relief of Christine's suffering, and for Jim and Judy's health and rest (they were up at 4am today).

Surgery complete

Greg's surgery is complete - they got going right away at 7:45 and finished around 9am.

The doctor described it as very routine, and said it went well.

There were 4 lesions, but they did not have to remove very much lung tissue at all - his lunch lung capacity should still be very good.

Greg is now recovering, and so far all is well. Since Greg did so well last time, the doctor does not expect to have any problems, so they are hoping he will be able to get out quickly.

Praise God, they got everything they know about at this time.

Surgery Time

Greg was scheduled to report this morning for surgery prep at 5:30am, so if you would like to pray for him, he estimates that he will be in surgery from about 7:00 - 9:30.

Prayer requests:

- that the epidural (for pain relief) would work. He will have this put in at around 7:00am. We didn't discover until his last surgery that failure of the epidural was a possibility, when Greg experienced the worst pain of his life.

- that the surgeon would successfully find and remove all 4 nodules (and any others on the right sight.)

- that Greg would lose a mimimum of his lung capacity

- that there would be no complications (blood loss, infection, etc.)

- that Greg would get decent sleep in the hospital

- that he would have good follow-up care from the nurses and physicians

- that Greg would sense the Lord's presence and feel strengthened for his recovery in the hospital. Last time Greg was blessed with a renewed attitude of enthusiasm towards his recovery. We know that this is rare, especially given the weariness that Greg and I have often felt toward his almost four years of treatment.

- that God would refresh Jim, Judy, me and others to be his support system. For the first time, I was not able to accompany Greg to Houston for his surgery due to a great amount of pain. Please pray that the new medications I have just begun will make a difference. Jim and Judy are with Greg for the weekend, however, Judy is recovering from bronchitis. We are so thankful for the support and help of family and friends. A dear friend from our church and fellow cancer survivor, John Rawley, will replace Greg's parents in Houston on Monday and stay with him for the remainder of his time in Houston. (Last time, Greg was released from the hospital after 3 days - Mon. - although Greg could be there as long as 7 days, and will need to stay in Houston an additional two days.)

- All during this time it is important for Greg to do his breathing exercises and walk about 4x a day to prevent pneumonia, even though he will be dealing with pain and fatigue. And of course this is all the more difficult with one leg! Pray that Greg and his caretakers would be diligent in pursuing full recovery, and also for good pain control and limited fatigue. Chronic pain is one of the possible risks.

- Finally, pray that this would all lead to Greg's body being healed of cancer.

We are so thankful for the strength we get from your continued prayers and concern!

Thursday, March 22, 2007

Scan report good. Ready to go.

lung_annotate.jpgThe ab scan paid off. It was clear. That means no new signs of cancer after four and a half months since being off chemo. Also, the left lung, which was operated on in January, was clear. This is all reason to sigh (no pun intended) and give thanks.

The right lung, which is the focus tomorrow, has four lesions. The largest was 6mm in Jan, 8mm in Mar, and 11mm yesterday. The arrow below is pointing to this 11mm lesion (it is a light-gray circle). This pic is a slice of my chest looking up (right is left, bottom is back). Most of the little spots in the lungs are blood vessels. They can pick up the tumors by the shape, density, and relation to other slices. The other three lesions are in other slices, so you cannot see them here.

The largest lesion is in the lower lobe of the right lung. The other three lesions are in the upper lobe. There are four lobes per lung. (We EE's always knew binary is the natural numbering system of the cosmos). How much Dr. Hofstetter has to remove depends on the location of the lesions with respect to the bronchial branching structure. It turns out that this largest lesion is close enough to the center of the structure, that it may require removal of that whole lobe. If he can remove it with good marin and keep the lobe, he will. He thinks he has a good shot at it. At the end of the day, I will be at anywhere from 65% to over 80% full lung capacity. You can survive on much less than 50%, but obviously, you want as much left over as possible.

Lots of good news. Now comes the hard part.

Dr. Hofstetter, me and his RN, Susan Knippel


Unfortunately, Christine�s pain has been about as bad as it has ever been in the past week. Pain in her limbs and hips as well as a migraine for several days. We went to her doctor Monday about it. He changed one med, but nothing drastic.

This is heart-breaking for both of us as it is coming at a particularly bad time. She is in Dallas and is still longing to come down to Houston, but we are not sure she will be able. I will still have the surgery tomorrow and my parents are coming for the surgery and weekend. My friend, John Rawley, who has assisted me on many chemo day trips in Dallas, is flying down Monday for the week. He'll help me in the hospital and hotel and will drive the car back. So I will be cared for.

Even though these MD Anderson trips are never "fun", Christine and I have actually cherished them as special shared times: the drive, the long hours sitting together in waiting rooms, the empty evenings to be filled as we wish, the tears, the small joys, rough appointments with doctors, and sweet times with our friends in Houston. So we are sad to be apart and still hope that a remarkable turnaround will result in her being able to come down for part of the time here.

Scans complete, with some tinkering

Today I meet with Dr. Hoffstetter to discuss tomorrow's surgery details. Yesterday I went to the CT Scan, which was again only for the lungs. I got to thinking that I had not had an abdomen CT since November. So I brought it up to the nurse. I have not had chemo since November and no one has scanned my abdomen since then, even though that is where the primary and one met was. Even in remission, they will do a scan every three months. Four seemed a long time. I figured this lung-only scan order could have been due to a gap in coverage. Dr. Hoffstetter focuses on the lungs, so he is going to order chest scans. Dr. Eng, who would have ordered the ab scan, has not seen me in a long time because I've been doing lung surgeries. Then there's me.

One part of me did not want to bring this up. If there is no scan, there can be no bad news. And the thought entered my mind that if something showed up on the scan, it could jeopardize even having the surgery. Not to mention, the abdominal scan is quite unpleasant (they fill the intestines with barium from both directions) and causes problems the rest of the day. On the other hand, I figure that more information can only help. Not scanning is not the same thing as being clean.

My pesky questions resulted in the radiology nurse calling my doctor and getting the order changed to be my whole torso. Did they just humor me, or was this a good idea? Was this an institutional slip-through-the-crack, or were they merely satisfying the customer. I'll never know.

The extent to which I can affect my own care is unnerving. Most people, including me, assume that the doctors call the shots and the patient follows. My treatment path has been significantly affected by my proactive tinkering. Since I know just how little I know about this stuff, it makes me wonder. At times like these, I appreciate more sharply the Biblical idea that I can exercise the will and affect things, and yet at the same time trust that all the days ordained for me were written by God before I was born.

Wednesday, March 14, 2007

One more day to enter tourney

ku_ut.bmp You can enter your NCAA tourney bracket for Greg's Place hoops contest up until the first game, which is tomorrow (3/15) at around 11am central time. Even if you don't know much about basketball, it is easy to fill out. See my previous blog entry for info on how to sign up.

Not everyday you get a chance to beat up on on a guy while he's in a hospital bed. (Although some have been known to crush me in chess while I'm on benadryl)

Monday, March 12, 2007

NCAA hoop picks, anyone?

You have been invited to join gregoryhewlett's Private Group in Yahoo! Sports Tournament Pick'em. Enter your bracket and compete with your friends.

Winner gets to be crowned Greg's Place Hoops Champ of 2007.

In order to join the group, click here.

Once there, Click on "Join A Group". Then pick "Private group". When prompted, enter the following information:

For our group enter...
Group ID#: 119929
Password: ihatecancer

Fill in your bracket before the tournament begins.

Saturday, March 3, 2007

Surgery date set Mar 23

I will have lung surgery on March 23, 2007 at MD Anderson in Houston. Dr. Hoffstetter will be performing the same operation as last time, only this time on the right lung. More info to come...

Friday, February 9, 2007

Going to Philadelphia this weekend

I was pleased that Christine was able to come down to Houston to join
me for the appointment with Dr. Hoffstetter. Given the fact that there
are no more necessary appointments or immediately impending surgery,
and the fact that we are living from suitcases this week, we decided to
go to Philadelphia for the Memorial Service of my friend, Al Groves (which,
by the way, will possibly be webcast from

We want to pay our respects to Al, whom I admired, appreciated, and will
greatly miss. We will be staying with our friends the Lindhs in
Ft. Washington and are excited to reunite with our friends at Gwynedd
Valley Church and the WTS community.

Post-op meeting update

The pathologist reported that the two cancerous tumors removed
from my left lung were intact with free margins. This means the
surgeon did not cut through either lesion, but got all of both.
There was no new indication of cancer in the left lung on the CT

The right lung showed slight growth in the tumors there, but it is
slow enough that there is no big hurry for surgery and I can wait
to fully recover from the left. We're likely looking at late March,
but no date was set.

Any time a cancer patient is told there is nothing particularly new
to report, there is a sigh of relief. Thank you, Lord.

Wednesday, February 7, 2007

Meeting with Surgeon

I meet with Dr. Hoffstetter tomorrow for post-op meeting. He'll take a look at the scans and, I expect, he will tell me a few things such as how successful the surgery was, how immediately necessary it is for me to have surgery on the other lung, how well I am healing, whether I can return to work, etc.

I am in Houston ahead of Christine for the scans today, and she will follow tonight or in the morning. She is having a very difficult time right now with pain, which is quite frustrating to her. I hope she can join me.

Tuesday, February 6, 2007

Al Groves

I grieve the loss of Al Groves, who was a good friend to me. He was diagnosed with melanoma recurrence and left us within a year. He supported me when I had cancer and he did not. Then he encouraged me while we both did. Now, I will miss him.
Al & Libbie Groves

Saturday, February 3, 2007

Resolutions of Edwards

edwards.jpg Jonathan Edwards is a fascinating character in American history. He was a pastor, theologian, and writer on topics as varied as philosophy, politics and even optics. He spent his life in positions as wide as living humbly among Indians in western Massachusetts to serving as President of Princeton University. He died testing a smallpox vaccination developed by a scientist friend.

I enjoyed reading Edwards during the years I lived in Boston, as I was being awakened in my Christian faith at the time, as well as enjoying connecting with the history of the area. I have always been intrigued by his resolutions, which he reviewed every week while he was alive. I uncovered them recently and was struck by the fresh challenge they set to me in my situation where I continue to skirt death and wonder if my end on earth is near. I imagine that in colonial times people were more aware of death, as it showed its face more acutely in a world where medicine was crude and life spans were short. This may not have been all bad, as the Bible seems to connect living wisely to being aware of one's own death (e.g. Ps 39:4; 90:12).

I have included below some of his resolutions which have poignant meaning to me today.

Resolutions of Jonathan Edwards (1722-1723)
Being sensible that I am unable to do anything without God's help, I do humbly entreat him by his grace to enable me to keep these Resolutions, so far as they are agreeable to his will, for Christ's sake.
Remember to read over these Resolutions once a week.

1. Resolved, that I will do whatsoever I think to be most to God's glory, and my own good, profit and pleasure, in the whole of my duration, without any consideration of the time, whether now, or never so many myriad's of ages hence. Resolved to do whatever I think to be my duty and most for the good and advantage of mankind in general. Resolved to do this, whatever difficulties I meet with, how many and how great soever.
5. Resolved, never to lose one moment of time; but improve it the most profitable way I possibly can.
6. Resolved, to live with all my might, while I do live.
7. Resolved, never to do anything, which I should be afraid to do, if it were the last hour of my life.
9. Resolved, to think much on all occasions of my own dying, and of the common circumstances which attend death.
17. Resolved, that I will live so as I shall wish I had done when I come to die.
19. Resolved, never to do anything, which I should be afraid to do, if I expected it would not be above an hour, before I should hear the last trump.
29. Resolved, never to count that a prayer, nor to let that pass as a prayer, nor that as a petition of a prayer, which is so made, that I cannot hope that God will answer it; nor that as a confession, which I cannot hope God will accept.
48. Resolved, constantly, with the utmost niceness and diligence, and the strictest scrutiny, to be looking into the state of my soul, that I may know whether I have truly an interest in Christ or no; that when I come to die, I may not have any negligence respecting this to repent of. May 26, 1723.
52. I frequently hear persons in old age say how they would live, if they were to live their lives over again: Resolved, that I will live just so as I can think I shall wish I had done, supposing I live to old age. July 8, 1723.
53. Resolved, to improve every opportunity, when I am in the best and happiest frame of mind, to cast and venture my soul on the Lord Jesus Christ, to trust and confide in him, and consecrate myself wholly to him; that from this I may have assurance of my safety, knowing that I confide in my Redeemer. July 8, 1723.
67. Resolved, after afflictions, to inquire, what I am the better for them, what good I have got by them, and what I might have got by them.

Monday, January 15, 2007

Free printed cancer materials

The National Comprehensive Cancer Network provides some high-quality booklets that are written by groups of oncologists at the top cancer institutes in the country. They are about 30-pages each and are kept up-to-date every couple years. These are good for patients, family members, pastors, friends, or anyone who would like trustworthy high-level information on various cancers and cancer-related treatment issues. The catalog is here. The booklets are also available electronically.

Saturday, January 13, 2007

Some celebrating

Carl, Sue, Christine and I went out last night to Trinity Pub down at Mockingbird Station for some Irish dining and music. A little celebrating of life. I was maxed out on pain killers at the time, so I don't remember how it was. They tell me we had a good time.


Thursday, January 11, 2007

Home Sweet Home

Last night, we flew back to Dallas. Sue and Carl drove back their car and ours so we could fly. It is so refreshing to be back home. I am thankful at so many levels. Still dominating my thoughts is how great it feels to be on the other side of that epidural-less hour. I still have pain now, but knowing what pain can be makes it easy to be thankful.


Looking back, when I left for Houston, there were so many things possible. And so many of them were difficult to contemplate. There was even the chance I had to be somewhat prepared for that I would not come back. And now here I am only a week later and on the quick path back to health.

I am on a couple different narcotics each day, so am not permitted to drive. I'll be just sitting here at home except when I'm not out taking one of my required walks. Being at home, though, is a good thing.

Here I am with Sir Koff-A-Lot and the other little one I hug to make me feel better (my other hug-when-hurting friend is taking the picture!). Can a guy be surrounded with more love?