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.

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.