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.

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.

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.



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

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."

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.

A Week at Sabolich - Friday

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

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: