August 27, 2008
Maintenance Chemo

I realized I have not written an update in a long time. Currently I am taking "maintenance chemo" consisting of oral Xeloda twice a day for 14 days followed by 7 days of rest. In addition I get an Avastin infusion every 21 days. The idea is to take enough chemo to keep the cancer in check, but at a recipe level that is reasonably tolerable. It's kind of like being in a military stalemate and shooting a few rounds across the enemy line every day just to let them know you're ready and make sure they don't get any ideas of advancing. If I go off chemo for much more than a month, Dr. Eng is concerned the cancer can get going with too much momentum. But to take the heavy stuff would be cruel and unusual punishment on my beaten body.

My scans just before the emergency surgery were stable. And my C.E.A. on July 22 was measured to be a very low 2.0, which is a good sign that things are well under control. I am increasing in strength and health due to some other things I'm doing under the advisement of MD Anderson's fatigue clinic. Christine commented that I actually seem to be in better strength and condition now on the maintenance chemo than when I was in remission.

But to be candid, I want to be getting rid of the cancer and not just being "stable". I don't want to be "doing well", I want to be clean of this stuff. Right now, though, they want to keep this going as it is. So I'm trying to build up strength and live as fully as possible until some new opportunity or obstacle comes in this fight.

In early October I'll be scanned and may get a month off.

Posted by Greg at 07:45 PM
August 11, 2008
Opening Ceremonies powered by DLP

Those big displays at the Bejing opening ceremonies were driven by DLP. Nice to know I'm working towards world peace (or is it assisting state propaganda?)

Posted by Greg at 12:08 PM
June 24, 2008
Home

Finally. I was just released a few hours ago after staying in the hospital thirteen days. The last two weeks were grueling. I won't go into any nasty details. It was bad. Bottom line - it seems like Humpty's pieces were successfully put together again and zipped up.

Christine is still doing very poorly with back, neck pain and headaches. So I'm recovering now at Mom & Dad's house up in Fairview.

I am glad now to be able to drink and eat freely. I have not been allowed to eat since getting to the ER. And I lost maybe 10 or 15 lbs. I'm going to write a new diet book: "Just Don't Eat"

Posted by Greg at 04:36 PM
June 16, 2008
Time of surgery

Surgery is slated for 7am tomorrow morning at Presbyterian Hospital of Dallas. Dr. Beecherl is the surgeon. I'll keep this NG tube that is currently in my nose until at least Thurs or Fri. The length of stay in the hospital will be determined by how much work is involved in untangling the mess and how quickly the intestines start functioning correctly. My own guess based on previous intestinal surgeries I've had is 5-7 days.

Posted by Greg at 07:06 PM
Surgery tomorrow

Two weeks ago, I went to MD Anderson for check-up. Things seem to be going well as far as the cancer. There are a few small suspicious areas, but they reamain stable compared with the scans four months earlier. The dr recommended a month of no treatment.

John R accompanied me and we drove back from Houston Tues night. That night I was woke with some abdominal pain. That pain grew during the morning. Long story short, I ended up in the ER with an immense amount of pain and was checked in to Presbyterian-Dallas Hopsital that evening with the dreaded NG tube suctioning my stomach. I have a partial blockage of my small intestine due to scar tissue from a surgery I had several years ago in that area. Things seemed to be progressing nicely once the suction began. Saturday, they removed the tube and by Sunday morning, they thought the intestines were unkinking themselves on their own and I could go home Monday.

But things turned bad Sunday afternoon. (And I'm not talking about Rice getting hammered 17-5 in the College World Series) After hours of misery and vomiting, as things began blocking up again, the doctor decided to reinsert the tube and is now scheduling surgery for tomorrow A.M. at this hospital. I am currently not in pain and feeling about as well as a guy can feel (that is - with a tube up his nose).

I am thirsty. I have not had any food or drink since Wednesday morning. Except a cup of juice and jello on Sunday that ended up in the throw-up pan. It may be true that "man does not live by bread alone" (Mt4). But I do like to eat once in a while. Looks like it'll be another half-week before I get to eat. I'm enjoying thinking about what wonderful meal I'll sink my teeth into. I'll do so with thanksgiving.

My surgeon here and I discussed my going to Houston to have Dr. Rodriguez-Bigas at MDACC perform the surgery as I've grown to trust him and he knows my innards well. But he's out of town this week. So I'm doing it here in Dallas as Presby. The surgery sounds straight-forward. But as Dr. Rod-Big always says, there is no such thing as a simple GI surgery.

One remarkable thing I've noticed - this all seems rather unstressful to me due to the fact that it has nothing to do with cancer.

One request - if there is anyone local for whom it would be convenient to be available to do some pre-surgery errands for me today, please let me know. My parents and family (Peck are in town) have been running back and forth to the hospital all week and we could use someone with some time and energy to assist. The Pecks are returning to St. Louis today and mom&dad live 45 minutes from the hospital.

If you are inclined to pray, please do so for no complications (I am in a weakened state after this week) and that this will not be a recurring issue, as can be the case. Also for Christine, who is continuing to have debilitating head and neck pain. She was able to be with me yesterday, which was great for both of us.

I am not taking calls because I cannot really talk with this tube in my throat. Best way to contact me is email to hewlett at alum dot mit dot edu

Posted by Greg at 11:34 AM
March 17, 2008
Madness

It has been a month since I've written. But instead of updating you with something meaningful just now, there is a timely matter at hand that is not so serious. I know that most of you are excited about March - you know, with it being Colon Cancer Awareness Month. I'm certainly doing my part by being quite well aware of it. But while you've been celebrating CCAM, you may not be as aware that March is also the time for NCAA hoop madness.

Last year a bunch of folks joined the 1st Annual Greg's Place Bracket Challenge. Some were basketball experts. Others had no clue. In fact, Hannah knows nothing about it, but last year was one of the leaders after the first day of the tournament, ahead of too many male ESPN addicts. In the end, my boss Gary won the deal. (no, I didn't rig it for favors) Can he repeat this year? You can help me prevent it if you fill out your bracket - whether you know what you're doing or not.

It is easy to fill out a bracket. Just click on who you think will win each game. Hints (1) The lower the seed, the better the team. (2) You have to fill out the whole chart, not just the first round. (3) The person who picks the winning team of the final game is very likely to also win the bracket challenge (like last year), and the tiebreaker will likely go to the one who picks most of the final four.

If you want to play, just click here. You may need to know the following:
Group ID#: 131175
Password: nomorecancer

Don't delay, the window to fill out your bracket ends in 2 days and 12 hours.

Your Tournament Pick'em Commissioner,
Greg

Posted by Greg at 10:39 PM
February 15, 2008
Surgery Cancelled

I got the results from the PET scan (which looked for signs of cancer around whole body) and pathology (which examined biopsy samples from hilar lymph nodes).

PET: No signs of cancer outside the two lymph nodes. In other words, the pulmonary nodule did not show up as cancerous. (doesn't mean there is no cancer there, only that if it is there, it is not big enough to register).

Pathology: Samples from only one lymph node were examined so far. There was a "few groups of distorted malignant cells in a background of extensive necrosis and microcalcifications." [necrosis = daed cells] In other words, mostly dead with a few stubborn cells remaining.

Result: Dr. Eng and Hofstetter consulted and, based on these results, cancelled the surgery. It is not even an option for me. Don't get me wrong - I'm not disappointed. The basis for surgery was weak to begin with. It was to get the lymph node (which is mostly dead, we now know) and the pulmonary nodule (which is not showing signs of being cancer - maybe scar tissue). They decided the right course is to continue chemo because it is currently so effective. Maybe it can keep killing the bad stuff. Surgery does not make sense right now.

I'll be in contact with Dr. Eng next week to find out what the plan is now.


Clarification
Based on some emails and calls I've received from yesterday's entry, I believe I should clarify. Cancer is not gone until it is all gone - every little cell. The results yesterday did not suggest a 90% chance that cancer was gone from my body - just that it was gone from the lymph nodes. Stage IV cancer is a long grueling war. Currently, I've got some good momentum in the war. And that is great reason to celebrate. But no one has yet suggested cure with these recent events - even yesterday before there were a few cells discovered. I have found it useful to not overstate how good or how bad things are. As my good friend John told me about his experience with his wife's cancer: don't get too high in the highs or too low in the lows. Or as St Paul put it, let your yes be yes and your no, no.

Posted by Greg at 04:14 PM
February 14, 2008
A bizzare day

I am emerging from sedation blur after a broncosopy today. They went into the trachea with a stiff pipe, through which they can do ultrasound and take needle biopsies into the neighboring lymph nodes. They extracted samples from the two "bad guys" threatening me. The result left everyone perplexed. Let me back up a bit and explain, as I have not written in a while.

I came to Houston last week for the big week of scans. I have been pressing for surgical removal of these two lymph nodes. The surgeon has been relucatant and I've been dutifully doing six months of chemo, hoping that a window of opportunity would open up.

The good news last week was that a window has opened to do the right nodule. This would be a right-side thorocotomy (basically, lung surgery). He would also remove the suspicious lung nodule that has appeared recently in the right lung

The bad news was that he told me that it would be all but impossible to remove the left lymph node. It is too deeply located and the risk of major problems (severing the pulmonary artery) is just too high. This was really the first time I have heard that a tumor was inherently inoperable due to its location, not just size. In the past I have heard "inoperable", but when there was shrinkage, I heard "operable" again. This isn't about shrinking, but where it is. Thus, this news about the left side means that the cancer is considered non-curable, and only manageable. Pretty devestating news.

Then came the very difficult decision - whether to do the right side surgery at all. The benefit is quite small because if you go in to deal with the right problem with no plan to go in and take out the left, then you are risking trauma and complications knowing there is no data showing any increase in life expectancy.

In other words, I asked, him, "If there are two Greg's in front of you - just like me - and you do surgery on one followed by chemo and radiation, and you only do chemo and radiation on the other, and you were a betting man, which would you put your money on to live longer?"

Photo_021408_004.jpg Photo_021408_004.jpg
Greg #1 and #2

"No way", he replied, "there is no way to tell." So if it is a toss up, why take the road that includes traumatic lung surgery (it is not fun). That is the big question.

One oncologist whom I trust advised against it. Others were open to it, but could not recommend it. No one encouraged it.

We went ahead and scheduled the surgery because I wanted to take out what we could while we have the chance. My logic is somewhere on the spectrum from brave to stupid to crazy. It is scheduled for for Monday February 18. So Tuesday night, I came down to Houston again for the biopsy, among other tests, etc. There is a "99.9% chance" we know what we are dealing with here. But a surgeon typically wants 100% certainty before opening you up. Thus, the biopsy. Incidentally, if I had chosen definitely against the surgery, they would go back to chemo and not waste time or effort on the biopsy.

BUT... back to the drawing board
So as Christine prepared to come down (she has been in a lot of pain recently), I came down early for the biopsy today. She was going to come down tonight and family members and friends were preparing to come down this weekend for the surgery Monday.

But when I emerged from the biopsy incredibly groggy (the procedure requires full general anesthesia), the doctor came to me with a smile and a perplexed look on his face. "We took three needle shots in each lymph node, which is the practice. And an initial look in the microscope revealed only a bunch of dead cells. So we went back and took a total of ten shots in each lymph node, twenty in all. All we can find is dead cells. No cancer cells. Apparently, the chemo has obliterated these tumors." I figured I was dreaming because I was in this sedated, dream state. But I heard right. They sent all the samples to pathology and they'll take an official, closer, look. I will hear the results come Friday or maybe as late as Monday. But there is a 90% chance, he says, that there are indeed no cancer cells in these samples. And that these two tumors are dead [or perhaps, "mostly dead" - Princess and the Bride]

So for now, it looks like there is not much motivation to do surgery if it is just going to go in and get a bunch of dead cells. The body will clean them up in a period of several weeks. Could there still be some bad cells in there? Yes, that would remain a possibility, and it only takes a handful. But I suspect the surgeon is going to rescind the offer tomorrow to do surgery - for good reasons.

I'll let you know what the results are. And what the plan is - everything is now up in ther air.

In the meantime I'll just soak in some good news and celebrate. So after two nights in a row of fasting for tests, I walked to Goode Company Seafood down the street for some oysters on the half-shell to celebrate.

Photo_021408_003.jpg


Life is a roller coaster, isn't it? And we humans are so easily whipped around. I am once again reminded of a passage in St. Paul's letter to the Ephesians. In Christianity, there is a concept that God's blessing extends beyond what can be immediately seen. Paul writes, " Now to him who is able to do immeasurably more than all we ask or imagine, according to his power that is at work within us, to him be glory in the church and in Christ Jesus throughout all generations, for ever and ever! Amen."

I have been driving everyone crazy sending emails and calling, looking for advice in making the decision for surgery. I've written former doctors and family members. Several of you have written back very thoughtful, helpful things to think about in this decision, which seemed to be one of the biggest of my life. I have thought about every possibility, every detail, every if, and, and but. I rarely lose any sleep, but a couple nights this week I stayed up thinking about all the possibilities.

But I didn't consider everything! The thought that this biopsy would just discover a bunch of dead cells never even crossed my mind. It was indeed more than all I asked or imagined.

I'll probably have difficulty sleeping tonight again tonight - thanking God and wondering in amazement at what possibly could be happening here. I haven't a clue.

Posted by Greg at 07:22 PM
January 09, 2008
Finally, round three

Again on Monday they deemed me too sick to take chemo. But today, we're on. It's been 28 days since the cancer last saw the chemo. It's in for a surprise this afternoon. Shock and awe, baby.

This is the last round to include Avastin. Then, in 14 days, I'll take another round with no Avastin. Avastin affects blood vessels and thus cannot be used near surgery. The earliest I can have surgery is 8 weeks from today.

I will go to MD Anderson after the next round to see if I can do the surgery. Then, if they decide to operate, we'll have to wait until the first week of March at the earliest for the actual procedure.

Posted by Greg at 09:00 AM
January 04, 2008
Chemo delay

I reported Wednesday for my chemotherapy, but due to being sick, they would not give it to me. I caught a bug over the holidays. They just didn't want to risk it - as a person with respiratory infection (what I have), if I were to get this chemo, the pressure on the immune system could put me at risk for pnemonia. I wanted the chemo, thinking I was mostly over the bug. Good thing I did not, because the symptoms have increased the past couple days. They re-scheduled the next round for Monday.

So the plan now is to rest over the weekend and try to get rid of this sickness... so I can get sick again from the chemo on Monday.

Posted by Greg at 12:10 AM
December 04, 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."

Posted by Greg at 11:20 AM
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.

Posted by Greg at 05:59 PM
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.

Posted by Greg at 11:42 AM
September 20, 2007
Tyler on the Run

Tyler.png

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.  

 http://www.active.com/donate/ACS08/TReitme62
 
My goal is to raise $3000 for this great cause.  Thank you for your consideration.

Tyler

Posted by Greg at 11:55 PM
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.

Posted by Greg at 11:51 AM
September 05, 2007
$19,134; or Why health care coverage matters

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

Posted by Greg at 07:56 PM
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
Oakland

Posted by Greg at 11:03 PM
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.

Posted by Greg at 11:40 AM
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.

Posted by Greg at 11:31 AM
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!

Posted by Greg at 07:46 PM
August 03, 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".

Posted by Greg at 09:42 AM
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.

Posted by Greg at 11:32 PM
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!"

Posted by Greg at 08:36 PM
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)


Posted by Greg at 08:50 AM
May 25, 2007
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.

Posted by Greg at 10:26 AM
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.

Posted by Greg at 11:35 AM
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.

Posted by Greg at 10:53 PM
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.

Posted by Greg at 06:52 PM
April 06, 2007
Some hospital pics

Some more pictures from the surgery...

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


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


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 :
Goode.JPG

Posted by Greg at 10:48 AM
April 03, 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.

Posted by Greg at 04:59 PM
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.

Posted by Greg at 04:58 PM
March 27, 2007
Discharged

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.

Posted by Greg at 04:32 PM
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.

Posted by Greg at 11:51 AM
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.

First_night.JPG


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.

Atrium.JPG

Posted by Greg at 09:24 AM
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.

Posted by Greg at 04:39 PM
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.

Posted by Greg at 06:12 AM
March 23, 2007
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!

Posted by Greg at 06:06 AM
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.

hof_n_me.jpg
Dr. Hofstetter, me and his RN, Susan Knippel

Posted by Greg at 07:46 PM
Christine

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.

Posted by Greg at 10:50 AM
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.

Posted by Greg at 10:43 AM
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)

Posted by Greg at 05:49 PM
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.

Posted by Greg at 05:22 PM
March 03, 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...

Posted by Greg at 09:26 PM
February 09, 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 wts.edu).

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.

Posted by Greg at 08:56 AM
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
image.

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.

Posted by Greg at 08:54 AM
February 07, 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.

Posted by Greg at 02:57 PM
February 06, 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.
AlLibbie.bmp
Al & Libbie Groves

Posted by Greg at 10:39 AM
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.

pub1.jpg
pub3.jpg

Posted by Greg at 11:30 PM
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.

WelcomeHome.jpg

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?

HomeSweet.jpg

Posted by Greg at 03:47 PM
January 08, 2007
Get out of here!

I was told to expect around a week stay in the hospital. I also heard five to seven days. To my great delight and surprise, this morning they discharged me! I did wake up with pretty bad pain this morning, but they figured out quickly how to address it with oral medication. So with pain relatively under control, and all systems in working order, I left. I am amazed and keep thinking there must be something wrong! My response is simply thanksgiving.

Believe it or not, the orders for my leaving were written up by our good friend Judy Wu (now Judy Dominick). You may remember me writing about Judy here or here.

GregAndJudy.jpg

Now some of you might be wondering if I slipped Judy some cash or somehow used my inside connection to get those orders signed. I'm going to invoke patient-doctor confidentiality on that one.

So here I am, back in my hotel room with Christine. I have to stay in Houston at least two nights in case complications arise. Now that I am out of the hospital, I am looking forward to some good rest.
back_in_hotel.jpg

Posted by Greg at 05:20 PM
January 07, 2007
Fast escape?

The chest drainage number that has to be low for me to leave was remarkably low today. As a result, to my surprise, they decided to pull the chest tube and told me I might be leaving tomorrow. Wow. I was originally told the tube would be in four or five days. In addition, I got a bunch of other unpleasant stuff unhooked today. This morning I woke up tethered to the hospital room with nine tubes and wires. Tonight I have only two. When we hit zero, I can bolt.

The last major thing left is to pull the epidural and work with oral meds until the pain can be managed. When they find the right dosage and mix for pain to be well under control, I can leave. They began the process tonight by capping off the catheter without removing it and giving me some oxycodone and super-tylenol. They will follow me closely through the night into tomorrow.

Posted by Greg at 08:25 PM
Lung exercise

The three devices I exercise the lungs with all day (yes, I'm bored)
device1.jpg device2.jpg device3.jpg


And Sir Koff-A-Lot.
bearclose.jpg

Posted by Greg at 11:37 AM
January 06, 2007
Walking around

Hi, Greg here.

I am so happy. After yesterday night's pain, all things are wonderful. Thanks everyone for the love and support.

I awoke yesterday from the surgery without a working epidural - Civil-War-battlefield-screaming-type-pain. They couldn't give me general stuff because you have to be awake for epidural placement. Sitting up and leaning over to get the second one inserted took about about an hour and I believe may be the greatest accomplishment of my life. All downhill from here.

They gave me this great little bear (comes free with the surgery!) to squeeze when I cough. He's got this cute little MD Anderson t-shirt and his given name is Sir Koff-Alot.
bear.jpg

All day, they make me cough, breath into machines, and walk. Here I am on my first walk this morning.
Walking.jpg

I'm watching the game with Mom and Dad. I just shouted a hooray as Romo connected on 4th and 2 to Crayton for a TD. Oooo, that hurt!

Posted by Greg at 08:31 PM
January 05, 2007
Lots of Pain

The epidural is not working and Greg is in a lot of pain. They are taking it out and putting in a new one.

Christine has arrived in Houston. She also is in a lot of pain and her medicines don't seem to be helping.

Please pray that the Lord will take away both Greg's and Christine's pain so they can rest.

Posted by Mark at 08:19 PM
Starting now (4:30)

Greg's surgeon was called into an emergency surgery sometime after the last update but before he could begin Greg's procedure. This led to several hours' delay.

We're told that Greg is now under anesthesia and will begin surgery very soon.

Posted by Mark at 04:31 PM
Started at 12:30

Telephone liveblogging by Greg's dad Jim...

There was pretty severe overbooking of surgeries today, not enough rooms (30ish) for surgeries (100+), so Greg didn't get started until about 12:30. The surgery will probably be over by 2pm, and we should have an update sometime after that.

Posted by Mark at 01:24 PM
A Short Delay

Greg called a few minutes ago. There will be a short delay due to an earlier case, so surgery is now looking more like 11. More as I have it ...

Posted by Mark at 10:08 AM
Last Meal

Last "meal" before pre-surgery fasting... chocolate meringue at House of Pies!

HouseOfPies.jpg

Posted by Greg at 12:02 AM
January 04, 2007
Surgery tomorrow (Friday)

I am sitting at my laptop the eve of a major surgery, as is my tradition. (How many repeated events makes a tradition? Three, four?) Today I went in for a couple of supposedly short appointments at 1 and 2 pm. I left the hospital at 7pm. Thus, the name "MD" Anderson ("Most of the Day")

I check in for surgery at 8:45am. It is the second thoracotomy of the day, I believe, of three or four being performed by Dr. Hoffstetter tomorrow. It is straightforward from his perspective - one to two hours.

Q&A
Many folks have asked me questions and several keep popping up. Here are some answers.

Q. "Why have they waited so long to do this - they've seen these spots all along, haven't they?"
A. Because when stage IV colon cancer is diagnosed, there may be hundreds of metastatic seeds planted before they take out the primary tumor. And they do not consider it beneficial to do traumatic lung surgery so early in treatment is there could be many more tumors lurcking beneath the surface. For me, now that I have been relatively stable for over three years, with only a handful of mets showing in the lungs and no evidence of disease elsewhere, they think that they may be getting most or all out with lung surgery - thus it is worth the effort.

Q. Doesn't your lung pop when they cut it? How do they repair it?
A. OK, here is a novice explanation. The lung is more like a sponge than a balloon. The surgeon deflates the lung then feels around. When he feels the nodule, he pinches it, and pulls it outward in a sort-of-stretching fashion. He then cuts and staple behind it with some fancy gadget, leaving intact the remaining lung structure. (Thanks, Judy, for finally explaining this to me in a satisfactory way!)

Q. How long will you be in the hospital?
A. Around five to six days seems typical from what I've heard.

Q. Does it hurt?
A. Yes.

Q. Will you be groggy in the hospital room?
A. The first few days, I'll have an epidural. So I will be alert and actually feeling little pain. Then when they pull it, they will have to give me narcotics, which will cause groginess. Of course, my wife and co-workers can attest that I'm a bit spaced out sometimes anyway, so they may not notice the difference.

Q. What about the right lung?
A. I am having surgery on only my left lung tomorrow. Dr. Hoffstetter would like to work on the right lung maybe a couple months after the left. There are nodules in both - larger ones are in the left. And the CT scan yesterday showed slight growth in the right ones. So we won't want to wait too long on those.

Q. What happened to the Owls?
A. Must you ask such quesions about such a difficult topic?

Q. Will you notice changes in your breathing?
A. The doc is planning on taking out about 5% of my lung tissue. The fatigue and chest pain subsides in a month or two, at which point he thinks I won't notice the difference in breathing.

Q. Where's the incision?
A. In the back under my shoulder blade. I originally thought it was my side, but I was wrong.

Q. How are you feeling about all this?
A. As for potential complications, worrying really gets me no where. I trust that I am in the hands of a loving God who is working out his plan for me, whether or not I enjoy the plan (right now, not). As for recovery, I'm not looking forward to the pain, but my goal is to endure one five-minute chunk at a time. I often recite Psalm 23, or similar passages, which I've brushed up on so I can focus during the most difficult moments. Some people think I must have gotten used to pain or have a high threshold for it. I don't really think so. It's not courage so much as not having any other choice. And to be frank, I'm not happy about any of this. I'd rather not have to rely on my faith, which is a weak muscle.

Some requests for prayer:
- That Dr. Hoffstetter will find and successfully pluck out the three nodules they can see on the scans. And that he will be able to detect and remove any others that are there.
- That I'll make it through the surgery without any of the major complications mentioned in the release form today.
- That Christine's pain and migraines will subside and she will be able to be right beside me during recovery process.
- That the pain will subside quickly and not be chronic, as is the issue in some cases.

My brother-in-law, Mark, will keep this blog updated tomorrow with surgery results and updates.

Posted by Greg at 11:50 PM
December 20, 2006
Date and surgeon

I will be having my surgery at MD Anderson hospital in Houston.

The surgery is currently scheduled for Jan 5. This date could change due to my health - I have to not be sick from cold, etc.

The technical name for what I am getting done is thoracotomy and mutliple wedge resections.

My surgeon is Dr. Wayne Hofstetter.
hofstetter_wayne.jpg

(He seems about my age. Who's to say we young folks can't pull the heavy weight in this world!)

Posted by Greg at 02:00 PM
November 30, 2006
Surprise - A lung surgery candidate

Looking at my blog, I see that I never wrote about my treatment plan. So what have I been up to? Well, I did another three rounds of chemo, only at a 21-day pace rather than 14-day pace. The 14-day was just too harsh on my body. They kept the dose the same on 5fu and irinotecan, but increased the avastin 50% to cover the 21 days.

This week, I had a CT scan as well as a new test they just started doing - a PET/CT, which is what it sounds like - a combination PET and CT. And then I met with a lung surgeon. I have had the hope for lung surgery all year. I keep being told by my clinical oncologist "maybe next time" on consulting the surgeon. But I have been getting the feeling that the possibility for surgery was slipping away and I may never even get to a position where I could even see the surgeon, much less have the surgeon agree that surgery was a good option.

Cancer treatment in a nutshell (or "why would I want surgery?")
So what fool would actually want lung surgery? Well, this one. Here is my personal simplistic way of looking at cancer treatment. There are three treatments: chemo, radiation, and surgery. Chemo is least traumatic, but typically only slows the cancer down or pushes back the line, and it eventually loses its effectiveness. Radiation can kill tumors, but not always. Also, it messes up the surrounding tissue, and you can only have a certain amount of radiation in your body. Surgery is painful and ugly, but it gets rid of the cancer, at least what was cut out. Simple as that. Many people are surprised to hear that when I woke up from my amputation for bone cancer as a teenager, my feeling was not one of panic or anger, but of relief. Losing a leg was certainly terrible, but the truth was - the cancer was finally gone. It is hard to describe to someone who has not heard the words "it's cancerous" from your doctor, just how much you want to get that stuff out at all costs. This is why the word dreaded by cancer patients is "unresectible".

So I have known all along that I needed the lung surgery. I had also prepared myself to hear the word "unresectible" today.

What I heard
I instead heard a sugeon who told me that I am a good candidate to begin having my lung tumors resected (med-lingo for "cut out"). One key reason he would say that is that it has been over three years since the primary tumor in my large intestine was removed (this is why they wouldn't consider lung surgery years earlier ). Only the primary can spawn new tumors (called metastases, or "mets"). The fact that are still "only" five mets means there is reasonable hope these are all of them or at least the majority of them. And that there may not be hundreds lurking (although that is still a possibility). Another important fact is that I am still clean of any signs of cancer elsewhere in the body. Surgeons are reluctant to put you through lung surgery if there is another tumor somewhere threatening your life. A couple other factors - my CEA is still normal (2.0) and my largest lung met after yet another three months was quite stable. So he thought now was the right time to go in and start cutting them out. He is going to start with those in my left lung (there are two, maybe three). The reason is that the left lung has the largest (1.5 cm). The other lung also has two or three nodules, but they are small enough they would be hard to locate in surgery. The funny thing is that effectively we will end up waiting for those to grow and when/if they do, then we'll get those. Reminds me of this story of Jesus.

My response
I had been preparing for some less positive messages. I had been thinking through whether I would beg and plead for the surgery if he said it was not worth it, or whether I would just trust him that "it is best". And I also thought he might still say "wait, and more chemo". What I did not expect was a cautious optimism, even confidence, on the doctor's part, along with numbers (as high as 30%) that actually show a possibility of getting rid of the disease altogether. I began immediately thinking of you all. And of my Lord who seems to be hearing our cries and answering in a way I could not have imagined. I hear many staff workers at MD Anderson joke me after seeing my history, "you've really come a long way" or "not too many people with as much experience as you". I felt some disappointment that I had not hoped more for good news. I think I have been let down so much, that I am less prone to hope. I still believe this promise in Paul's letter to the Romans, but I have also learned His "good" does not necessarily equal my personal desires. Lately I've been experiencing that it usually does not. I have often been riding on the faith in the Lord of my brothers and sisters around me. Thanks.

The surgery
Is this a difficult surgery? Yes. He says it may be more traumatic than the other major surgeries I have had. (I've had four and they were all pretty bad!) But the bottom line for me is that the doctors believe that this actually gives me the only chance for cure and at least should extend my life enough to make it "definitely" worth pursuing. They will take out enough tissue that my lung capacity will be reduced to about 95% for the rest of my life. What does that mean? That would mean that when I am at the pool, I will only be able to go about 95% of a lap underwater. Seriously though, this is not good, but it is a price I willing to pay.

They were able to schedule the surgery as early as the 14th, but I requested more time off as I am very fatigued, I'm still feeling sick from the chemo and a cold I got over thanksgiving, and I'm just plain worn out right now. So I'm taking a break and we are looking at the first week of January for me to have lung surgery on my left lung.

Posted by Greg at 11:29 PM
September 14, 2006
Quick note about result of scans and scope

Since many have been calling and I know several of you want to know how it went today, here's a brief report.

The scope was normal as expected. The CT scans of the lungs showed things are "stable". The largest tumor, which is about 1-1.5cm, is the same length, but "may be slightly narrower." The full report wasn't even ready, so I won't have the details until next week. It was enough, though, for Dr. Eng to decide that I should keep doing the same chemo I have been doing, maybe get a little more shrinkage - at least squeeze this chemo for what it is worth as long as it holds things at bay. Only she wants me to do a lower dose or lower frequency because the side effects are beating me up. Then we'll reevaluate after some more rounds. I'm going to call and try to discuss in more detail with Dr. Shapiro in Dallas tomorrow to find out what this means and how we'll proceed. The meeting today was rather short.

Posted by Greg at 07:04 PM
September 08, 2006
I'm Back

I finished round ten. It has been quite grueling, but I pressed through all ten even though along the way there were times when the doctor (and Christine) thought I needed a break. Maybe they were right. But I had scheduled out all the weeks and planned accordingly. There was my work schedule. And there were the three different families (Julie's Susan's, and Anne's) who visited and it would have messed things up badly had I got out of sync in the weeks by skipping a week. What a silly reason, you might think. Putting my body at risk, just to keep a schedule? My only response is that a person suffering seeks to hold on to something - anything - to control. Something to accomplish. You cannot just let go of all goals when you have cancer. I have let go of so much. I still mourn over all the goals and hopes I have left behind these past few years. It feels like just about everything got tossed overboard to keep this ship afloat, in fact. But I still hold to a few goals. This was one of those I held to ... and kept.

I want to thank the many of you who have written, emailed, and called to check in on me. It is apparent that I am blessed with a strong group of people who are collectively lifting me though this. So many of the calls and notes I have left unanswered. I hope I have not lost these friends by my silence. One of the notes reminded me of this story:

A few days later, when Jesus again entered Capernaum, the people heard that he had come home. So many gathered that there was no room left, not even outside the door, and he preached the word to them. Some men came, bringing to him a paralytic, carried by four of them. Since they could not get him to Jesus because of the crowd, they made an opening in the roof above Jesus and, after digging through it, lowered the mat the paralyzed man was lying on. When Jesus saw their faith, he said to the paralytic, "Son, your sins are forgiven."

Now some teachers of the law were sitting there, thinking to themselves, "Why does this fellow talk like that? He's blaspheming! Who can forgive sins but God alone?"

Immediately Jesus knew in his spirit that this was what they were thinking in their hearts, and he said to them, "Why are you thinking these things? Which is easier: to say to the paralytic, 'Your sins are forgiven,' or to say, 'Get up, take your mat and walk'? But that you may know that the Son of Man has authority on earth to forgive sins . . . ." He said to the paralytic, "I tell you, get up, take your mat and go home." He got up, took his mat and walked out in full view of them all. This amazed everyone and they praised God, saying, "We have never seen anything like this!"

I think I have such friends.

So how am I and what's next?

I have been pushing along day by day. Most of the little energy I have had, I have used going to work - to keep the bills paid and because it is another one of those purpose things, and one I happen to enjoy. The problem is that when I get home, I pretty much collapse on the sofa like I ran home from the office instead of driving. Sound unbalanced? It is. Even though they say that all you need to know you learn in kindergarten, the truth is that nobody taught me how to fight cancer.

This weekend, we head back to Houston. This time I get the full round of tests: colonoscopy, full CT, you know, the works. That's going to be a big one-two punch for this weak body. But I don't think much about the difficulty of a few days. I am more focused on Thursday, when I meet with Dr. Eng to find out the results and chart out what is next. It is odd meeting with someone to find out about your very life. I have had dozens of such appointments. I am still not used to it.

For this one, I have no idea what to expect. I am not thinking too much about the what-if's this time because there are many different possibilities, and many treatment plans that could be recommended for each. I'm praying for good results and wisdom in the direction to go. We'll worry about the details of making the plan once we hear the results and Dr Eng's recommendation. "Each day has enough trouble of its own."

Several brave souls have joined the no-hair club since I last wrote. I need to tell about them, but I'll save that for another post.

Posted by Greg at 03:23 AM
June 15, 2006
Round five

Tuesday, I began round five of the irinotecan. We added Avastin to the mix, hoping for some additional effectiveness. I'm having to rest a lot, but seem to be doing a bit better than the previous rounds. They unhook me today. The next two days are typically the roughest, but I think I have a good start here.

I have some new members of the no-hair club. Pictures coming soon.

Rice is once again in the College World Series. They are seeded #2. Would be fun to go if I were healthy. Maybe next year.

Posted by Greg at 09:30 AM
June 10, 2006
CT results - stable

The lung nodules are "stable". No reduction, no growth. I have taken, I estimate, around 75 rounds of chemotherapy in my life between this cancer and the bone cancer I had as a teenager. These rounds consisted of around 8 different chemo protocols. With all this experience, this was the first time that a scan revealed that the chemo treatment had not significantly reduced the size of the tumors. Disappointing. Could be a lot worse, I suppose.

Dr. Eng says stability is a good thing in their business. The chemo is holding back the tumors. The largest nodule doubled from 0.5 to 1.1 cm in two months from January to March. In the three months since then, it has not grown at all. So she wants me to continue the protocol I've been on. Six more rounds is the plan, starting this week. She also added, "and let's throw in some Avastin to the mix." This struck me a bit odd - like Emeril throwing in some garlic based on his spur-of-the-moment logic that garlic always is a good idea.

Avastin is a drug that I took last year. It is technically not chemo - it does something to the tumor blood vessels. Adding it now, she said, cannot really hurt anything and it might help some. I sure hope so. If we continue to see stability or some reduction, then she will send me for a lung surgery consult. It is a long shot, because the nodules are in different places. But that would be the best option of getting rid of the tumors. I am used to praying for long shots.

I called my oncologist in Dallas and spoke to his PA about the news. She told me that a stable CT scan report is "excellent" when it comes to colon cancer lung nodules. "Excellent"? I feel like I just won a free room upgrade on the Titanic.

Posted by Greg at 10:40 PM
May 27, 2006
Chemo break

Dr. Shapiro postponed my chemo a week. My white blood cell count was too low. Also, he was concerned about the intestinal pain, which is likely due to irritation caused by the chemo. He said to me, "I'm going to try to talk you into taking a week off." He thought I would resist. It is true, I didn't want to give the cancer the week off, but the doctor didn't think it would make a big difference and he wanted me more healthy to hit me with the next dose. Sounded reasonable to me. The past few days the pain has indeed subsided, and the mid-week blood count showed the white blood cells climbing quickly. So we'll start the fourth round Tuesday. I'll then go to Houston the following week for CT scans and meeting with Dr. Eng at MD Anderson.

In other news, we have three new members, bringing to 15 those who are feeling the breeze...

currytop.jpg john airtop.jpg andrew vesttop.jpg scott

Check the members page to see who they are.

Posted by Greg at 11:39 PM
May 22, 2006
Membership hits a dozen

Greg's No-Hair Club for Men is gaining momentum. The satisfied membership is growing. And the entries are beginning to get creative...
DavidClemmons_aTm.jpg A true Aggie.
DavidPagan_before.jpg So David, is your boss going to join?

Click to see all the members.

I was asked yesterday, "How does it feel that all these people around the world are uglier because of you?"
"It feels great!" I replied.
Of course, the secret that we club members understand is that there is only beauty in hating cancer and feeling the breeze.

All of this a a fun blessing to me, distracting me from the growing pain I've been having lately in my lower intestines. They say it is due to the chemo irritating where the radiation was. The pain lollipops they are giving me (same as back during the radiation) makes it tolerable, which is a good thing because I want to keep this chemo coming so it can do its job in my lungs. Round four is Monday morning. Ugh. Daily I must look to the Lord for strength to go another day. Thanks for your prayers and support. I believe this is how I find that strength to keep going.

Posted by Greg at 11:45 PM
May 20, 2006
Three new members

Three new satisfied members are feeling the breeze: Charles & Michael Burck and David Ray.

From my sister Julie in San Fransisco...

Dear Greg,

This morning, we went over to Chinatown to see Ann at our favorite place, Charmante Beauty Salon. It is described by SF Weekly as the “best cheap haircut for Men in the city!” It is located across the street from the famous Washington Square, (a park, playground, and big cathedral) and he posed for you on a tree in the park. He did climb up himself…he wanted you to know!

I’d like to say that Charles was really excited to be a part of your club. I am confident that the lollipop and playground across the street had nothing to do with his excitement about getting his haircut!

While he was getting his haircut I was reminding him how we were going to get it cut and then Uncle Greg would put his picture on the computer for all to see…and he says, “Like in the Bible. We’re going to cut off all my hair and I’ll lose all my strength!”

Mike was on a business trip and got back this afternoon. He hadn’t heard about your club and wanted to join too, and Charles was very excited about Daddy joining with him.

Love ya, JuJu

Pics of Charles, Mike, and David and all the other satisfied members is here.

Posted by Greg at 10:14 PM
May 19, 2006
New member!

Greg's No-Hair Club for Men announces their first new member since going public. Can you guess who it is?

MarkPeck_top.jpgDear Mr. President,
It would be a great honor to be considered for membership in your club. I have attached before-and-after pictures as proof that I have in fact taken the necessary steps to qualify. Should you have any questions, please do not hesitate to contact me at xxx-xxx-xxxx.
Sincerely, ???

Click image to find out.

Posted by Greg at 11:28 PM
I'm having a no hair day

I've been noticing my hair falling out. The irinotecan has a knack for doing that. I decided I'm not going to keep brushing hairs off my desk, picking them out of my food, fretting about whether the thinning is noticeable, etc. I'm not going to give the chemo that pleasure. So I cut it all off. Chemo is my servant, not the other way around.

Check out how you can become a member of Greg's No Hair Club For Men.


Posted by Greg at 07:35 AM
May 03, 2006
Better second round

The horrible first round must have been an anomaly. I think I had a stomach virus underneath everything that pushed me over the edge requiring me to be hooked up at the clinic every day. It had to be something like that because I am doing much better this second round. Dr. Shapiro reduced the 5-fu some this round, so maybe we'll be able to go back to the full dose next week. This week, I have been able not only to stay out of the hospital, but go to work the last few days. This is a relief, as I have been sick it seems for a very long time and I have not been able to work or do much of anything for four weeks.

Speaking of work, some of you have asked if I have been able to work through all of this. These past three years of treatments, I have been working about 3/4 time. I work at Texas Instruments designing DLP technology (go #96!). Much of my work during treatments has been from home (or wherever I am). I am very fortunate to have the kind of job where I can do this. In fact, I actually do some of my more productive work alone from home. I think this goes back to my education - I spent two-and-a-half years in high school doing what they called "home bound school" due to the bone cancer that I had at that time. This struggle has been very rough in a lot of ways, but I am very thankful to have a job that I enjoy. I know not many people get paid to do what they enjoy. So I count this blessing.

Posted by Greg at 07:51 PM
April 25, 2006
Some Easter pics

In spite of how I was feeling, Christine and I had a very enjoyable Easter this year. Her parents Carl and Sue drove down for a week from Delaware to help out and to visit. Her sister, Sarah flew down for the weekend with little Mati and Mia.

Here are some pics.

EasterDinner2006.jpg Easter dinner. Mati, Sue, Sarah, Greg, Mia, Christine. Carl is taking the pic.
GregChristineEaster2006.jpg Greg and Christine after Easter service.
GregMatiKazooBand.jpg The Greg and Mati Kazoo Easter Band

Posted by Greg at 12:00 PM
April 22, 2006
First round complete

I am just now recovering from the first round of chemo. This was as rough as any round I have had. That's why I haven't written in a while.

The week of the chemo I was very sick. The following "rest" week, my intestines would not hold anything - I lost every bit of fluid and food I could get down. As a result, I spent every day this week at the outpatient clinic hooked up to IV fluids and potassium. The doctor was concerned at the slow recovery. I was bummed because in the long term, I don't want them to stop, delay, or reduce the chemo. And in the short term, I wanted to get back to work and catch up with things at home after a week of being sick.

Things are finally better today. So I get about two days of break and then the next round begins Monday. I'm ready to go. And I am simply hoping that this past round was a fluke and not a sign of incraesed problems to come.

Posted by Greg at 09:30 PM
April 11, 2006
A custom protocol for a feisty patient

After seeing Dr. Shapiro on Wednesday (Dallas Presby) and before seeing Dr. Eng on Thursday (MDAnderson), the two of them had chatted and figured the chemo I needed to take next is Erbitux+irinotecan. Erbitux (a.k.a. cetuximab) is the drug that landed Martha Stewart in prison relating to its FDA approval and resultant effect on stock price. With FDA disapproval, the stock price was supposed to fall. The next year it was actually approved because of how well it works. "It works" in the area of cancer is not the same as in electrical engineering - I think around 10-15% of patients see response. One great thing about Erbitux is that it seems to "reinvigorate" irinotecan when used in combination - giving irinotecan a new chance to work when by itself it had stopped doing so.

I was not too happy about this decision - I was not ready to give up on one or both of the previous chemo protocols I have taken. So I started asking some hard questions about this in my meeting with Dr. Eng. You might say I argued. Hard, even. Christine was shocked. I think I was, too.

But what is taboo when your life is at stake? And what harm are questions seeking understanding anyway? The way I learn and enjoy discussion with many of my friends and coworkers is to ask hard questions, often playing devil's advocate. To me, it is a sign of respect. And it seems to generate the best overall ideas. But not everyone likes it. Some people hear it as disrespect. Or a waste of time. But like I said, when life is at stake...

To my pleasant surprise, Dr. Eng was not taken aback at all. She took all the time I needed - and she listened well, as evidenced by her restating my questions better than I could express and the fact that her answers directly addressed these questions. I expect and pay for medical treatment. But I considered this engagement a bonus.

This is not to say she did not counter me. She said that the model for understanding how chemo works is that when you have finished its prescribed course, and the remission is short (in my case, really only 4 months), then you consider that it is losing its effectiveness and you need to move on to another drug. Back and forth we continued in this surreal interchange. And then, as surprised as I was that the debate was even taking place, I was more surprised that she began to reconsider. She even began to agree.

"Wait, wait," I protested. "You're the expert! I have no idea what even I've talking about." Surely the instincts of Dr. Shaprio and Dr. Eng have more validity than my novice way of thinking. On the other hand, we are all humans. I have been following one case for three years, thinking about it daily. They had to digest a ream of my records in a short time while treating dozens (hundreds?) of patients.

In the end, Dr. Eng did not simply say "ok". She took my concerns and fashioned a counter-offer. I was thinking along the lines of the more recent protocol, which kept the lung nodules out of the CT scan for the many months I took it. She thought we should instead go with the original 2003 protocol: 5FU + irinotecan ("FOLFIRI" in oncolingo). Maybe there was still some oomph left in the irinotecan. And she wanted to go with intravenous 5FU - it will be easier on my liver than the oral form. So maybe I won't have to discontinue it as I had to do with the Xeloda in Spring 2004 for that reason. I asked her several questions trying to discern whether this new plan was some sort of appeasement (i.e. let the crazy guy do what he wants). That's not it, she responded. She thought this was a good plan and drew it out in a flowchart that reminded me of a DLP system diagram. So I was convinced.

Here is the custom protocol: 8 straight weeks of FOLFIRI in 14 day cycles, immediately followed by a CT scan. If the nodules remain stable or reduce(!), keep the chemo coming. If not, we haven't wasted too much time and can try the Martha Stewart recipe. Dr. Eng seemed eager about the plan. I was encouraged myself, as odd as that may sound considering the overall bad news. It was a good thing.

I then spent an hour at Salento – a coffeeshop in the Village with wireless – while Christine walked around. As the live jazz guitarist played, I poured over my blog, which is becoming a great tool as my memory refresher. As I read, I became even more convinced this is a worthy plan. Irinotecan, I was reminded, was involved in the dramatic destruction of my tumors back in 2003. Again I was reminded how far we have come. In just 2 rounds, my primary tumor was found with surgery to be reduced to 20% viability (translate: 80% dead). And in 3 more rounds, my huge liver tumor had shrunk so much that my surgeon said “stop the chemo, this man is surprisingly fit for surgery”. Following the liver resection, Dr. Hoff took me off the irinotecan because it had done its job. He instead had me take the Xeloda alone to prevent further tumors. So maybe that irinotecan was pulled from the lineup with some hits left to give. Time to pinch hit. (Replaying a batter after being pulled is not against the rules. In fact, I’m figuring out there aren't really any rules here). I'm hoping irinotecan will be my Kirk Gibson.

Yesterday, I took the irinotecan at Dallas Presbyterian. Today I am reclining at home connected to the 48hour fanny-pack pump of 5FU. Dr. Shapiro stopped by my chemo chair yesterday during the irinotecan drip to chat. Apparently he and Dr. Eng have been talking. "Is Dr. Eng just appeasing me here?" I asked. "No, he assured me. We actually like the feisty patients". Cool.

Posted by Greg at 10:17 AM
April 07, 2006
Lung biopsy positive for cancer

Yesterday, I discussed the biopsy result with Dr. Eng at MD Anderson. It is indeed colon cancer that has spread to the lungs. I had actually heard the news the day earlier from my Dallas congologist, Dr. Shapiro, because they had talked. All conventional thinking says this is not curable. But Dr. Eng is not quite ready to throw in the towel. In fact, if the chemo works well, she is not ruling out the prospect for surgery in the future to remove the nodules (that is really the only known way to get rid of them permanently, but conditions for surgery are tough to meet). She has two (only two, but more than zero) patients who are clear 1.5 and 3 years out from where I am now. We have to keep in mind that 4 of the 5 available chemo drugs for colon cancer were approved later than 1998 and 2 of them were approved in 2005.

Still, this news is not good at all. Chemo does not tend to work as well in the lungs. And when tumors affect the lungs, you get fluid in them - very bad. But I'm ready to get going with some more treatment to kill these little guys in my lungs. Chemo begins Monday morning in Dallas - IV at the clinic with home pump for 48 hours. Every 14 days. Four rounds. Rough days ahead.

It is very important for this chemo to work well. The plan is a bit risky - I'll tell you more about it later. My protocol is unique.

Two things were impressed on me in my discussions with these doctors. (1) It is very rare for someone dia