The Struggle Has Ended

Greg Hewlett passed away on January 17th after nearly eight years of battling colon cancer. While we grieve his loss, we are comforted to know that he is with his Lord.

If you would like to leave your thoughts on Greg, please see this thread.

If you would like to make a charitable donation in Greg's honor, please see this thread.

Sunday, June 29, 2003

MDACC diagnosis & protocol

It is difficult to write this, as I am exhausted in many ways and would rather not report discouraging news. But I so appreciate everyone�s support and prayer and want to bring you up to date on some new things we know.


Monday.
We were very thankful to make it to Houston. The fever situation made the trip seem beyond our reach on Monday afternoon. But as mysteriously as it shot up, it returned to normal by the time I was examined at St. Paul. My brother-in-law, Mark, stepped up to the plate at last minute notice to drive us to Houston through the night. I accepted all of this as a gift and answer to our desperate prayers earlier that day when everything forward looked dark and bleak.
The week at MD Anderson Cancer Center (MDACC)
Since early Tuesday morning, with the exception of time off on Thursday, we have been at MDACC from morning until late night. They operate some of their diagnostic imaging equipment until midnight to keep up with the demand. Some departments also run way behind. My appointment yesterday with Dr. Xiong was scheduled for 11a.m. We finally saw him, in piecemeal fashion from 3:30 and 5:00. I�ve fasted, held my breath, been poked and prodded, had tubes stuck in various places, taken �apple-flavored� potions, and talked to suited men while in too-small pajama gowns.
The reasons for many of the tests is that the liver profile CT scan, which produces a higher density image than a standard abdominal CT scan, revealed some suspicious activity in other parts of my body. These needed to be looked at. Bottom line is that there are two very small spots in the lung that could be cancerous and that the lymph nodes around the colon tumor are enlarged, possibly because they are cancerous. They are very careful to say they do not know for sure on either case, as there are other possible explanations. The scans will be used as reference and time will better determine what they are. The lung spots are very small � the chest x-ray does not show them. The lymph node problem is actually quite common with colon tumors and is less serious than the liver lesion because they were regionally affected, not spread via the blood stream. They will be taken out with the colon surgery. The lung spots were a huge emotional disappointment to me. For three years during my battle with bone cancer, they took probably dozens of chest x-rays, looking for �spots�. They�re so darned good at looking for trouble at MD Anderson. But each anxious time they looked for �spots�, the results were clear. So you can imagine my disappointment this time at unexpectedly hearing that dreaded word.
On a good note, the liver lesion was confirmed to be one large lesion, not many small ones, as originally thought by the radiologist at UT Southwestern. In addition, the liver is doing something I consider marvelous. There are two lobes in the liver, one larger than the other. The large lobe of my liver is predominately cancerous, but the small one is normal. As I�ve mentioned before, after surgery, the liver can regenerate. Well, right now the good lobe is growing. The good cells are dividing because they �know� something bad is up with the other side. The liver surgeon said this is good because it allows him to take a lower percentage of the liver out with higher margins around the area taken.
Other symptoms
My weakness from low red blood cell count seems to be getting better. But at the same time, new symptoms are arising in the past week. The fever and body aches come on quite easily now if I am not religious about taking Tylenol every four hours. They are quite sure this is because of the tumor. And I am getting strange, sometimes sharp, heartburn-like pains associated with eating, but also with lifting things. They think this is due to increasing pressure from the liver on the stomach. Both lobes of the liver are growing � the good and the bad. To me it seems like the board game Risk. Armies are being deployed and piled up on two adjacent territories getting ready for the big battle. Only in this case, the surrounding territories are feeling the pressure.
Doctors
My surgical oncologist is Dr. Vauthey. That appointment went very well. He explained everything thoroughly and assured me that this is well worth pursuing very aggressively, especially given my age. His P.A., Steve Wei, indicated that he sees people recover from where I am now. Dr. Vauthey also said that technically, he could remove the liver lesion right now � it would not be too big. But because we cannot afford any more delay in administering chemo, it is important to get chemo first. I am beginning to see symptoms associated with the tumor and the CEA level is growing.
The meeting with my clinical oncologist, who will manage my chemo treatment, did not go so well. However, we were so thankful for our sister and friend, Judy Wu, who is a P.A. in another department. She sat through all of our appointments with Dr. Xiong and his staff on Friday as an advocate and jargon interpreter. There is a stereotype of oncologists as only coldly thinking about the cells and the statistics, but not about the person being treated. Dr. Xiong is the original source of this stereotype. Being nearly five hours late, he seemed irritated that we wanted to have a discussion beyond five minutes. I don�t consider myself and Christine as being unintelligent, but we were both very confused by his description of the options. We continued to push to get our questions answered and did to some extent. Later, due to some confusion about how to get me on a particular clinical trial, he and/or one of his staff came back in the exam room a couple times for short questions or discussions. His research nurse talked with us at around 4:45p.m. and left, saying �see you Tuesday�. Judy, Christine, and I interpreted this as �goodbye� and left. Fifteen minutes later they paged us (via Judy) wondering why we left. They were working on a way for me to get a required procedure Monday so that chemo could start next week. So we returned. When Dr. Xiong saw us walking back into the hall, he turned to his P.A. with a kind of why-are-they-still-in-my-hair look, �What problem do they have?� They put us back into the exam room and we received a couple of more visits by staff people. After a while, they stopped coming back, even though no conclusions had been made about Monday. We figured we could leave after 6p.m. because no one was around. No hello. No apologies. No goodbye.
Judy called this day an �eye-opening� educational experience for her to see what new patients go through since she only sees it from the other side. I do not look forward to Dr. Xiong being the manager of my chemo and all the side effects that are coming. In a way, I am entrusting my body and my life to this man. I have been trying to remind myself that we will deal far more with his staff than with him. At MDACC, you do not choose your doctor. They choose based on work load and specific area of expertise. It requires a formal documented complaint process to switch doctors. Right now, I believe it is far more important to move forward with chemo immediately. He does seem very intelligent and competent, and I am confident I will be receiving the best treatment available for the cancer itself. That�s my first priority and apparently his only. Thanks for hearing out my vent.
Protocol
I will not go into the options, but Dr. Xiong believes the best approach for me is to get on a clinical trial for a new chemo drug, code-named PTK787, that blocks the blood supply in tumors. It will be given in addition to the FOLFOX protocol, which is one of the two standard three-drug treatments for colon cancer. It requires 48 hours intravenous infusion over three days. I would come in and get a portable pump hooked up to my port to administer the chemo. The next day they refill the pump with another drug. The third day I would come in to remove the pump. If I get approved, I will either be taking FOLFOX plus PTK787 or FOLFOX plus placebo. Colon cancer has 40-50% chance of responding well to the FOLFOX protocol. They are testing if that improves with PTK787. Because this trial is at Phase 3, they believe that it promises improvement.
If the chemo is not successful, and the cancer does not respond to alternative chemo treatments, either, then I was told that they will not perform the surgery. So it is very important for the cancer to respond! Dr. Xiong also noted that there is usually an extraordinary reason for someone my age to be getting this type of cancer. (I have been noting that in the waiting rooms, everyone is in their 50s, 60s, and 70s. I�m an anomaly). He said it is either some sort of genetic cause (my uncle had this at 45 years) or that it is due to all the chemo I got 20 years ago. If it is the former, then the cancer responds at typical rates. If it is the latter, he informed me, then the cancer tends to be less responsive to chemo. I vote genetic.
Dr. Xiong�s team is examining whether I meet all the criteria to get on the trial. For one, my blood counts have to be at certain levels before starting. Also, I am required to have two procedures � one is that a port has to be surgically placed beneath my skin into which the chemo will be administered by a special needle into the port. The other is an endoscopy, where they will insert a tube down my throat to examine my small intestines. One of the drugs can mess with the digestive tract, so they have to have a baseline. In order for me to start next week, these have to be done on Monday and Tuesday. This is because the chemo treatment must be administered over three consecutive days (Wed � Fri).
The endoscopy takes at least a week to schedule. I am very fortunate that I actually already had one scheduled by Dr. Vauthey for Tuesday morning because of the problems I have been having with my stomach. I am so thankful we just happened to have it scheduled. My hope it that this test will not show anything that will disqualify me from the trial.
As for the port, they were not able to schedule one for Monday or Tuesday afternoon. I could instead get the old-fashioned external port (I had two such ports twenty years ago). These are more susceptible to infection and are a pain to deal with, especially regarding bathing, site cleaning, and bumping into things with them. I would really rather have the internal port. MDACC has an arrangement with Hermann Hospital next door to do this surgery for overflow cases, but they are also booked. However, it turns out that Dr. Perkins back in Dallas has the pull to get one scheduled (�likely�) on Monday at St. Paul. So here was the crazy plan as it stood on Friday evening. I would fly back to Dallas Sunday night. Dr. Perkins said he would �likely� be able to schedule it for Monday. Mom was to pick me up from the airport and take me for the port surgery sometime Monday. Then I would fly back Monday night for the endoscopy Tuesday morning at MDACC. I did not want to wait another week for chemo and did not want the old-style port, so I was willing to do this. On the other hand, Judy and Christine both thought given my condition it would not be good for me to travel. Dr. Xiong, not surprisingly, did not care one way or another. Then Saturday I got a call from Judy (our angel-advocate). She had been working the phones with her contacts at various other hospitals in the Medical Center. She found a surgeon at Methodist Hosptial who said he would do it Tuesday afternoon! She�s going to call with the insurance information and schedule the surgery. So I don�t have to go anywhere. This is a big relief.
Pressing on
Christine has had some migraines this week and is experiencing her own quiet battle with pain and fatigue while trying to support me. She has been given some energy this week and is pushing forward beyond her ability. Together, we're just hanging in there. The news, the disappointment with Dr. Xiong, and the unknown future were all difficult to swallow this week. However, day by day we continue pressing.
The Lord told the Apostle Paul �my power is made perfect in weakness.� �That is why�, Paul says, �for Christ�s sake, I delight in weaknesses� and in difficulties. For when I am weak I am strong.� We didn�t choose this trial. But because the power of Christ is made perfect in the weakness and difficulties of those who are in Him, I do not want to hide my ordeal. Instead, I tell it to you as I experience it because I believe that somehow in doing so, His power is made perfect. I want to say with Paul, �I will boast all the more gladly about my weaknesses, so that Christ�s power may rest on me.�

Saturday, June 28, 2003

Prayer Requests

It's been a difficult week. I am working on a more informative description than what follows, and will post it soon, but in anticipation of worship tomorrow morning I wanted to share some prayer requests.

Please pray:

  • That I will qualify for a clinical trial to receive a new drug in addition to standard treatment, and that I can begin Wednesday.
  • That the required endoscopy and surgery to insert a chemo port would be both scheduled and successfully performed either Monday or Tuesday.
  • That as part of the trial I would receive the new drug plus standard treatment, and not a placebo with standard treatment (50% of the participants are 'controls' and receive a placebo).
  • That the cancer would stop spreading and that I could be healed entirely.
  • That Christine and I would have good health, perseverance and hope, and that we would be filled with love for one another during this stressful time.

I hope to be able to share more details soon.

Wednesday, June 25, 2003

News From Houston

Judy got a call from Greg last night. She reports:

Everyone arrived safely in Houston, and yesterday and today have been filled with a battery of tests, a CAT scan, and doctor meetings, all of which have gone well. Christine appears to be feeling better than she did last week, and Greg is feeling good rapport with the folks at MD Anderson. Hopefully all of these tests and consultations will provide some good treatment direction, and the meeting with the surgeon will be moved up from next Monday to sometime this week so that Greg & Christine will be able to come home a little bit sooner.

More news as we get it.

Monday, June 23, 2003

Headin' to Houston

[posted by Mark for Greg]

This afternoon was a wild ride. Everything was going smoothly until my fever went up to 103.6. Doctor Perkins didn't want me to go to Houston until he'd had a chance to see me, so we headed to St. Paul's wondering if I was going to be admitted and stuck in Dallas for the night.

Fortunately, the fever abated and I was cleared to go to Houston with regular doses of Tylenol to keep it under control. We are about to hit the road and will arrive very late tonight. Please pray for traveling mercies.

On the road today

After what seemed to be such a long wait, we are on the road to Houston today. Yesterday was a bit of a setback because I woke up with fever again and slept most of the day trying to restore energy. Christine, on the other hand, began emerging from one of the worst migraines she's had in years - about a week long. Her relentless pain this week was very frustrating for her. My fever is better today and we are praying she will be fit to prepare and be able to travel today.

I woke up many times last night, probably because I slept most of the day. But I sense the real reason is that I am so ready to get this show on the road.

Thursday, June 19, 2003

Two natural foes



I call him Tom, my pessimist skeptic
Prone to despair
Judging guilty �til perfect
Contingency and chance his only friends
Smug in the hands of impersonal fate.
Nate is his foe, with head in the sand
Ears for platitudes, trust in the chime
�Don�t worry, be happy, all will be well�
Wishing on stars in optimistic denial.
Happily never after.
Neither can rest
In my soul right now.
Neither can swallow
The report.
I rejoice in revelation, for in it I hear
Unyielding echoes of reality,
The state of the world under the Fall
Far darker than Tom could admit.
The vanity of life and the waves up to here.
Injustice in cities and blood in the land
Hearts withered like grass, drinks mingled with tears.
And I rejoice in revelation, for in it I find
A hope.
More brilliant, more satisfying, more profound
Than Nate could possibly know.
A firstfruit, a taste
A guarantee.
A deposit made that will surely be paid
A cosmic event rippling even today.
I must find a way
To grasp this answer
Shaming both Tom and Nate.

Wednesday, June 18, 2003

Initial plan for trip confirmed

MDAnderson2.jpg MD Anderson Cancer Center (MDACC) called me this afternoon with the first seven items on our itinerary down there. We're headed to Houston Monday evening for the first appoinment Tuesday morning.

The initial plan highlights:
6/23 (Mon) Christine and I will drive down to Houston
6/24 (Tue) I have a series of tests and meetings from 10am until 9:30pm
6/25 (Wed) Meet with Dr. Nicolas Vauthey, the surgeon lined up for my liver tumor
6/30-7/2? I am supposed to plan on being in Houston for 5-7 working days(!) for all the possible tests and consults. And that doesn't seem to include any actual treatment.
Some notes
This came together quickly by the help of Vauthey's phy. asst., Steve Wei, who is a friend of Judy Wu, our friend from Rice. He has been helpful in explaining the process to me and pushing from the inside. One thing he explained to me is that MD Anderson likes the patient to consult first with the oncology surgeon (Vauthey), then the clinical oncologist, even though the treatment is often (and in my case) in the reverse order. Unfortunately, I don't yet have an appointment with a clinical oncologist (there are four at MDA) until the 30th. But Steve seems to think once I get down there and meet with Vauthey, they will work me in.
Steve also explained to me that the delay is not significant in the response of the liver lesion to chemo. It would be an issue if my blood CEA level (a marker for how agressive the cancer is spreading) were in the 100s or 1000s (normal level is below 5). In such a case, immediate chemo might make a difference. Since mine is at 62, it probably doesn't. This was one of my precious few "good" news objective data points from all the first rounds of tests.
Judy Wu reassured me as well on the delay. Hurrying by a week or two is not nearly as important as getting all our ducks in a row and getting a good accurate diagnosis and plan laid out. A good plan is the best way to deal with cancer. This makes sense to a guy who avoided all biology after living in a hospital for most of three years.
One of the tests on Tuesday is a special "liver protocol" CT scan which has thinner slices and intravenous-contrast timing such that it gives a much clearer picture than what I have from last week. As my job at TI is all about image quality, I can appreciate this! It won't be fun to have them "looking for trouble", when I already have plenty. But it is good to know they are being so thorough and careful to diagnose accurately. This further confirms my desire to be down there.
I am beginning to feel an improvement in strength. The best way I can describe anemia from my experiences is that it is like being at very high altitudes. I'm still up on Everest, but I'm not at the peak any longer and I'm on the way down.
Prayer requests
I have some specific requests for those who are praying:
* That nothing new will be found in the diagnosis.
* That a solid diagnosis will be made
* That wise decisions (doctors and us) will be made regarding the treatment plan (chemo choice, possible use of trial drugs, timing of surgery, whether to do the chemo in Dallas, etc)
* That I will be able to meet with a clinical oncologist soon after we get there
* That Christine's migraine will go away and she will be physically up for the trip. She has had a migraine for three solid days now and is in a very dark existence. I have a very bad disease, but she is the one physically suffering. We cannot even really talk much about Houston plans due to her condition.
* That the liver lesion will respond well to the chemo
* That the Lord might heal my body
* That Christine and I will enjoy our time together next week as a gift, and that the Lord will refine us by this fire.
Praise:
* The MDACC trip has firmed and they have agreed to see me and drive my treatment
* The ongoing success of the iron treatments and my change in direction in strength
* For our friends, the Jonssons, who will be hosting us in Houston, and for others in Houston who are willing to help us
* For Judy, Steve, Dr. Jaffe and all my personal allies at MDACC

Monday, June 16, 2003

Feeling better, RBC count rebounds

Today I had my third I.V. iron treatment - a triple dosage. My body again took the iron and associated drugs well. And I'm feeling bettter from the weekend.


At the doctor's office, they did not seem too concerned with the fever. It had been 101.4deg but had fallen this afternoon about a degree. They just figured it was the drugs. This reminded my mother and I of the years of chemo back in the 80s. Whenever I got a cold or the flu or other symptoms that normal people consider quite problematic, the cancer medical staff seemed to be unphased by it to get to the important things - like chemo, getting blood counts correct, etc. Today's situation had the same flavor.
My red blood count is up to 10.0. It had been as low as around 9.4. It needs to be 12-15. This means that the first iron treatment from last week is now starting to produce results - more red blood cells. This is a sign I will begin regaining strength. One more iron treatment is scheduled for Thursday. That is supposed to be all I'll need.
So overall, the fever symptoms, bodyaches, etc. are nearly gone tonight. I am planning on some good rest and the ability to get back to work in the coming days. Incidentally, TI is letting me work at home when necessary.
One other note - Christine and I have a dear friend, Judy Wu, from college who is a physician's assistant at MD Anderson in Houston. We had the oportunity to see her this Saturday in Dallas. As soon as she got back to work this morning, she added her firepower to the pressure and talked with several people including a GI doctor. They haven't called me yet, but I doubt it will take any longer than necessary for them to respond with all my allies down there. The strategy to get the attention of the MD Anderson GI department is my personal version of a shock-and-awe campaign. Thanks, Judy, for being a solid member of the coalition-of-the-willing...
I am thankful for all of the above and for having made it through another day.

A rough weekend

I haven't written anything this weekend because since Saturday night, I've had a fever and body aches and have been having trouble sleeping.

This is in addition to the weakness from low RBC count for which I should start seeing improvement this week due to the iron. I talked with Dr. Oeffinger yesterday and he thought the fever symptoms were probably due to the drugs I'm taking that counter the allergic effects of the iron transfusion. He told me it would be safe to hang in there until this afternoon (Monday) when I go in for my next iron treatment. They'll check me over then.
I'm really looking forward to all this strength they say I'll be getting back beginning this week!

Friday, June 13, 2003

OK, <i>now </i>they have the goods

I wish I could report more, but today I did get a refreshing word that the GI department at MD Anderson now has all the reports and films they need to begin clinical review, "to see if there's anything they can do for me."

I guess that means they will determine whether they think that it is necessary to go down there. Hard to say. But I do think I'll get an appointment. One interesting note... the referral nurse at Anderson told Cali, my patient advocate, that "UT Southwestern was a good place for me to be." Was she doubting the necessity of this referral? Jaffe doesn't think so!
I am supposed to hear the reply Tuesday or Wednesday, when they will call to schedule an appointment. "Maybe", she said, "they will call as early as Monday".
Tonight, Christine and I went to the Magnolia Theater to enjoy Spellbound, a highly acclaimed documentary about the national spelling bee. It is hard to imagine that a story of eight youngsters studying dictionaries and winning regional bees could be so riveting, but the reviews were great and I have to admit it was as engaging as anything I've seen in a while. It was about patriotism, the problems of urban and rural life, illegal immigration, contentment and competition, and various views of success. Best of all for me, it kept me from thinking about cancer for a whole two hours.

Thursday, June 12, 2003

Scavenger hunt victory

Well, the reports weren�t sufficient for MD Anderson. They want the original films and actual pathology slides before scheduling an appointment. Ugh.


I suppose this makes sense if they are really going to give a true second opinion diagnosis. They don�t want mere interpretations from others � they want the goods. I had thought the plan was for me to take them with me when I went, but they want them up front. So this afternoon, mom and I played a high stakes game of scavenger hunt and managed to get into our actual hands the CT, MRI, and PET films. Each of these came from a different building in the UT Southwestern complex and each had different release permission requirements. We made it to FedEx just in time to ship them off to Cali, my patient advocate at MD Anderson. We were pleased with our victory. The only item still remaining is the actual set of pathology slides from the evil man with the staple gun. Those have to be sent directly from lab to lab. Perhaps MD Anderson will be ready tomorrow to schedule an appointment for me with all but the slides in their hands � I hope so.
I�m emotionally drained from trying to keep this process moving. Everyone says not to be anxious about all this. I agree, but it really seems that my continued pressure has been required to keep this process moving. I think I�ve irritated about half of the staff at these two institutions calling, questioning, confirming, and reconfirming what they need, what they have, and what needs to be sent. But I keep on it because the rules and requirements seem to change depending who and when I call. Still, they're kind to me and probably quite used to it.
And now, tonight, as I rest after the scavanger hunt victory, I realize I've done everything I can do and now must trust it all comes together. That's my prayer.
By the way, I tolerated the double dosage of iron today well. Next Monday and Thursday I scheduled getting a triple dosage. They think that is all I�ll need to get my strength back.

Wednesday, June 11, 2003

Reports are in the hands of MD Anderson

Just a tidbit of news...

All the test reports have been completed and faxed to my patient advocate (Cali) at MD Anderson. Tomorrow morning she will take the documents by hand to the GI department. With pressure from Dr. Jaffe, I hope to have a schedule soon of when I will be able to go down to meet with them. I am so eager to get going, but they keep telling me a few days or even a week or two is not going make a big difference here. Still, let's get this show on the road - the waiting is killing me (or I guess maybe not).
Coincidentally, Cali is an adult survivor of perdiatric osteosarcoma and a right-side above-knee amputee - exactly like me. [none of this about Cali turned out to be true - not sure how I heard that - Greg 06/12/03]
Tomorrow (Thursday) I have another I.V. Iron Treatment - they're doubling the dosage this time.

Reflections on shared burdens

In the past week and a half, I have been enjoying the effects of the Christian principle of �bearing one another�s burdens.� The result has been a renewed vigor to fight.

The phrase "bearing one's burdens" comes from a command in the Biblical book of Galatians. Like so many other expressions in the King James Version of the Bible, this phrase has worked itself into the English language and has lost some of its edge in common usage. But it really is quite a powerful concept.
The idea here is that the church � which is at the same time invested fully in the world and exists as an alternate society or �kingdom� from the world � is likened in the Bible to a family. Jesus and the writers of the New Testament use the term �brothers� to describe those who are in this alternate society. It is interesting that this is the metaphor chosen. Of course, family members are not those with whom we would necessary choose to associate, like we do our friends. Rather they are those to whom we are born and to whom we are naturally related. Part of the joy and difficulty of life in a family is learning how to get along with and learning how to love and appreciate one's family members. But to me, one of the most remarkable aspects of a family versus a collection of friends is that family members go the distance with you. They make sacrifices for you. They grieve when you grieve and rejoice when you rejoice, in spite of their own situation. If you go to prison or suffer from AIDS or are the victim of a disabling auto accident, your friends may drift away but your family will more than likely still claim you as their own, at least when a family works the way we all somehow know that families should. In more typical trials, they regularly pick up some of the load on your shoulders and bear it on their own. This is a wonderful feature of the church when it is working as designed.
In anticipation of surgery last week (when I did not yet know it would be cancelled), I got together at short notice with a group of guys from my church to hang out for an evening. I was expecting and hoping for an evening of distraction � maybe some pool, a little poker, etc. At the get-together, I also wanted to spend a short time just telling them what was going on, and what kinds of things I was going to need from them in the coming year. Beating cancer takes extraordinary will power and I wanted to ask them to help push me along. I also wanted to tell them that saying stupid things to someone with cancer is way better than distancing themselves altogether, so please stay engaged. This short request turned into a long discussion about what I was going through and what my concerns were. More remarkably, they shared with me their own difficulties dealing with my cancer. I came to find out that they were burdened by my illness. There was even some shared weeping. They also communicated to me why they wanted me around and how I might be missed in the coming months as I fight this thing. We discussed how suffering fits into Christianity. Finally, they spent some time praying for me. That evening, as my good friend Jay Horne drove me home and we were discussing the problem of suffering, I began to notice a remarkable thing had happened that night. My burdens had been distributed among these brothers. They weren�t merely offering to �help� (which can sometimes be a safe, even patronizing offer), but they were genuinely engaged in a sort of suffering-with-me. They were fulfilling one of the purposes of a church � to love one another like family. I knew this taste from my natural family and from my in-law family. And now I saw that the church was providing that same taste.
As a student of Greek, one thing that I have noticed about the New Testament is how often the second person plural is used in commands. Many of the exhortations given are to �ye�, but there is no good contemporary English word for �ye� (That is, other than �ya�ll�. Southerners, you see, have discovered that �ya�ll� provides a precise, useful way of expressing the second person plural, but Northerners prefer to be remain imprecise and vague because they think �ya�ll� betrays a certain stupidity. I must admit, after living in the Northeast for many years, I avoid using it myself when possible.) So for example, the New Testament command to �pray continually�, is actually �ya�ll pray continually�. In other words, many of the Bible�s commands are intended to be heard and obeyed corporately. The fact that "you" is ambiguous, and that we Westermers are so individually minded, results in our missing the corporate element of these commands. The command I referred to above, �bear one another�s burdens, and so fulfill the law of Christ� is a plural command. You might say the command is �ya�ll, bear one another�s burdens.� The beautiful thing about this is that the burdens of an individual member of the church are to be borne corporately by the church. This is what I am thankful to be enjoying right now.
One last thought about this concept. It is interesting that the Bible says that in bearing one another�s burdens, we �fulfill the law of Christ.� It is a Christian activity to truly bear burdens. I�m not saying that only Christians can bear burdens. Nor am I saying that all (or even many) Christians actually do so. I am merely saying that Christianity provides a solid foundation for true burden-sharing. This, I think, is because this command is rooted in the concept of sacrifice and emptying oneself for another. God himself established the pattern for this when he lowered himself to become like us, suffer for us, and die for us. You might say that in Christ, God bore our burdens in the deepest way. From this perspective, Christian ministry to others becomes an activity of humbling oneself to bear the burdens alongside those whose burdens are heavy.
One Christian brother of mine, who was not there that night, told me individually (and I believe honestly) that he wished he could bear the cancer in his body for me. Wow! What can I say to such love? The Apostle John put it this way, �This is how we know what love is: Jesus Christ laid down his life for us. And we ought to lay down our lives for our brothers.� As I have seen this concept put into action in the past week in the comments and actions of dozens of brothers and sisters, I have been greatly strengthened to fight this battle.

How You Can Help

Many friends have offered various kinds of help during Greg's treatment and recovery, and for such offers he is indeed grateful. As most of you know, Christine suffers from chronic pain and regular migraines, so this new situation with Greg could make things difficult.


For those of you who are in the area (or even not) and would like to help Greg and Christine, their brother-in-law Mike Burck is assembling a "care team" and a list of needs to match. Contact Mike if you are willing and able to help with things like meals, rides, grocery shopping, miscellaneous chores, etc.
In your email please indicate the kind of help you would be able to provide as well as your general availability.

Monday, June 9, 2003

Cancer transformation

I have received encouragement and requests for continued posting of poetry. This I wrote this morning while the rest of my house slept.
...

Cancer transformation
Eight months? Eight years? Eighteen? Twenty-eight?
The certainty of death;
Our certainty in life.
Still busy around me, they craft meaning with meaningless tricks.
Pressing, consuming, judging, racing, scheming, ignoring, laughing.
What meaning can be found
In this cancerous world
But what is true for all?
3:00a.m., June 10, 2003
A sleepless night after post-iron-treatment meds
(�may cause difficulty sleeping� - now there's an understatement)

Dr. Perkins' (UT-SW) Diagnosis & Protocol

Today, we successfully took another step down the long road. The iron treatment went well. As for the diagnosis, there was some good news, some confirmed bad news, but thankfully no new bad news. We also know what the protocol will look like if we stay at UT Southwestern for treatment.

To begin with, a significant reason for thanksgiving is the fact that I did not have any allergic reaction to the intravenous iron treatment. We had a choice of the get-your-blood-levels-up-in-weeks version or the get-your-blood-levels-up-in-months version. The "weeks" version is what I need to move on to chemo, but it has far more serious side affects including very serious allergic reaction (even death, it says in the drug book). Still, we chose the "weeks" version given my need to get moving on chemotherapy. They began by giving me two steroids and benadryl via IV to prevent or mitigate allergic reaction. Then, they gave me a very small dose of the iron to see if my body reacted. It did not, so they gave me the full amount. In all, I received about 1/8 the amount they estimate I need for my body to get its red blood cell level back to normal. The great news is that I had absolutely no effects from the iron at all. This means I can go back and get a higher dose later this week, and perhaps after just a couple more treatments next week, will get the blood levels up to normal and regain my strength, which is still seriously lacking.
As for the diagnosis, oddly, we were all (Christine, my mom, and I) actually relieved... mostly because there is no more bad news. It just seemed like every time I met with a doctor in the past week there were more problems. First I heard colon cancer. The next visit I heard I had colon cancer spread to "many" lesions all over the liver. Then it became colon cancer plus many liver lesions plus a cancerous mass in the bladder. It seemed to me that things were really getting out of control. The PET and MRI halted the spiraling bad news and confirmed the following:
(1) I have a single large colon cancer tumor, near the liver
(2) This has spread to metastatic (medical firends - is this even a word?) cancer on the liver, probably via the blood flow
(3) There is only one lesion on the liver - however it is very large (apparently, this is better than lots of small ones, which we originally thought was the situation)
(4) The PET scan, which exposes any cancer activity in my lower torso, shows no other regions besides these two. This means no signs of cancer in the lymph nodes, the bladder, the intestines, the love handles, the beer (coca cola?) belly, nada. Dr. Perkins actually thought this was a good sign because with the time required for the liver tumor to grow so big, it is remarkable that there are no other places in my body where the cancer has spread.
The protocol:
The liver lesion is too large to surgically remove. Pending the second opinion from MD Anderson, which I hope to get in the next week, the plan of action would be as follows. Take three proven colon cancer drugs together intravenously as an outpatient one day per week for eight out of nine weeks (I would get a one week break half way through). Then get a CT scan and hope that the tumor has reduced in size. When it is small enough, go to surgery and in one operation, take out the colon mass and shave out the liver lesion. Incidentally, I have learned that the liver is the only organ that regenerates itself. Cool. Then, maybe take some follow-up chemo to clean up any microscopic activity.
One encouraging thing to me about this plan is that the chemo sounds much better than what I had for bone cancer 20 years ago. At that time, I was completely out of commission the week of chemo as an inpatient for at least four days. With the colon cancer drugs, I do not need to stay in a hospital and it seems like I will be back at work a day or two later. I will be very glad to be able to continue with "normal" challenges of life in parallel with cancer treatment.
So that's the scoop. Bottom line is that we need to shrink that ugly liver lesion. That's my big prayer request right now, in addition to guidance as I make the decision whether to get treatment in Houston at MD Anderson.
The across-the-board statistics aren't that great for this stage of colon cancer - around a third are "cured". But Dr. Perkins seemed relatively positive given my condition. His experience is that for those in my condition, cancer seems to respond well to chemotherapy. As someone who deals with mathematics every day, I know that statistics are funny. They can deceive and can never can take into account all the factors. And I'm just one sample. Better still, as Carl says, with God all things are 100%. His plan is perfect and his will cannot be thwarted.

Mailing Address

Greg and Christine's mailing address is 4409 Taylor Lane, Richardson, TX 75082.

The liver biopsy

I have added a new activity to �Greg�s list of things I do not want to repeat in my life� � the liver biopsy.

I don�t know why I didn�t think it would be a big deal. To me, it was just a check box along with the PET scan and the MRI. It was just another innocuous �test� on the list of things to do last Friday. Well, I won�t get too graphic, because children may be reading this site, but the liver biopsy involves a spring loaded needle gun and some insufficient local anesthetic. �Are you ready for another one?� he would ask, aiming his torture device between my ribs. Now how am I supposed to answer that? Seven samples later I was left traumatized in pain, but so thoroughly blissful that the evil man with his staple gun had left the room. We hung out in recovery for a couple hours because of the significant risk of bleeding. (Fortunately, there were no such complications!) While there, the nurse gave me a happy pill, after which I felt, well, quite happy. Christine, Sue (my mother-in-law), and I worked on crossword puzzles with the help of the nurse and Google on her computer. Isn�t Google great?
We had made it though another small hurdle. One day at a time. To celebrate, Sue took us out to a great Mexican restaurant, Ciudad. Fine Mexico City dining. Fine company. The only missing component was my dear father-in-law and lover-of-all-good-dining-and-conversation, Carl.
Monday plans - intravenous iron treatment and diagnosis meeting.

Sunday, June 8, 2003

A Reminder for Monday

If you're like me, you check this site several times a day looking for news, background info, or a provocative thought from Greg. Hoping to take advantage of this ongoing curiosity, I wanted to remind you to be praying for Greg tomorrow.

You'll recall that tomorrow Greg takes his first intravenous iron (first a small dose to check for allergies, then a larger one if the first one 'takes'). He and Christine will also meet with Dr. Perkins, the oncologist, to learn the results of the tests taken last week.
I asked Greg tonight what they were hoping for in tomorrow's meeting. He and Christine are hoping and praying that the spots on the liver are really something other than cancer (such as scar tissue from hepatitis that he had as a teenager, unlikely as that might be). And, as he pointed out before, if it turns out to be liver cancer instead of colon cancer spread to the liver, that is ironically a good thing. You can also pray that Greg will not have an allergic reaction to the intravenous iron.
Of course, pray that God's will would be done and that Greg and Christine would have the peace of Christ in the midst of uncertainty and danger.

Thursday, June 5, 2003

First morning poem

The morning after my original diagnosis, I awoke early and sat down at my computer. This is what I wrote.
...


evils converge
for some reason I had in the back
of my mind
a thought.
the thought whispered that the first fight,
the first hurdle,
the first dragon,
the first evil.
the first time I got cancer � would suffice.
the beauty and balance that attracted me to math,
turned my ear towards jazz,
delighted me with love,
caused me to see the beauty of the Creator,
somehow also led me to believe that
the first evil would suffice.
I nurtured that thought, feeding it well.
while all the while knowing that it had
nothing from the beautiful Creator on which to hang.
the plan I assumed was written on my heart
the perfect number sequence optimized.
then I came to find out it did not suffice.
a second evil.
showing its face unashamedly.
24-bit color on a digital colon camera.
unrelated.
no correlation.
unfortunate coincidence.
without bias on my body of 35 years.
Dr. Wilkofsky shakes his head.
two evils converging upon my soul.
beauty will not allow them to prevail.
it cannot.
He must not.
May 30, early morning, day after diagnosis

Wednesday, June 4, 2003

Diagnosis meeting is Monday

Today I have a PET scan, tomorrow an MRI and liver biopsy. Early Monday afternoon I get my first intravenous iron. Afterwards, I meet again with my general oncologist, Dr. Perkins. This will be an important meeting where we reinterpret all the results that have come in so far. We'll know a lot more at that time about what is going on with the liver.

Incidentally, I was very thankful and pleased to find out that my health insurance, which is through TI, covers a second opinion and even full treatment at MD Anderson. That is one less thing to worry about.

Tuesday, June 3, 2003

A little good news - bladder, stomach fine

I talked with Dr. Oeffinger tonight. Today he got with the radiologists to pursue information regarding this bladder mass that is potentially cancerous. Bottom line is that not only is it not cancerous - it's nothing! ... just an artifact that didn't appear on the original. Yahooo! In one day things moved from very very bad to very bad. I'm liking the direction.

Another bit of good news - my stomach is calming down. In anticipation of surgery, after which my doctor said I would not be able to eat for at least a week, I engaged this weekend in, shall we say, excessive bad eating. Christine said it was ok. I had a cheese steak sandwich and fries Saturday for lunch (I normally limit myself to one of these per month), pizza for dinner, cold pizza and coke for breakfast Sunday (I haven't been allowed to eat that since I got married) and chips, queso, sausage balls and chocolate chip cookies for Sunday dinner. That night my stomach was giving me all sorts of pain and trouble. Being paranoid of cancer after the diagnosis, I of course had all sorts of worries that the pain was the cancer spreading to my stomach. Well, since then I've been eating normally and my stomach is fine.

TNPC Men's Prayer Meeting

Wednesday morning, June 4, the weekly men's prayer meeting at Greg's church will be focused on prayer for Greg.

For those who are visitors to this website from other, faraway lands, I invite you to join us in lifting up Greg and Christine in prayer in your own place. Our meeting is from 7:00 - 7:30 and I've attached the handout for your reference.
If you do plan to pray at that time (though perhaps not in that place), let us know by posting a comment so we can encourage Greg and Christine with further evidence of our mutual faith expressed in community.
Download file

Dr. Jaffe - an old friend

Dr Jaffe was my oncologist for bone cancer back in the early 80's. He is one of the leading oncologists in osteosarcoma. Dr. Jaffe and I have a close bond. For years we battled that disease and were victorious together. I also had the opportunity to go snow skiing with him a couple times and see the man without the white jacket. He is a brilliant man driven by a near-obsession to beat that disease. He lives to save lives. It was obvious to me that this was his passion. His hard work was used by God to spare my life.

This morning I talked with Dr. Jaffe. He still works at M.D. Anderson. (I thought he was nearing retirement when I first met him in 1982!) He told me he was deeply moved by the news. He recalled that day nearly twenty years ago when he had to communicate to me I had cancer.

After I recounted what had happened in the past week, he told me to send all records and reports to him. I asked him if he needed official summaries only or everything. "Send me everything," he replied, "you don't have a physician over here, you have a friend over here."

I have some new comfort knowing Dr. Jaffe will be by my side as an advocate through this. "You must be optimistic," he said as we ended the conversation. "Keep your courage up. And you must come see me when you come down here next week."

I'm looking forward to seeing him again.


Test schedule for week of June 2

MRI, PET scan, and liver biopsy are Thursday and Friday, June 5-6. Trip to M.D. Anderson is likely sometime next week. Everyone's support is carrying us along.

Monday, June 2, 2003

No surgery this week

�Now wait just one cotton-pickin� minute�, my dad likes to say. It turns out that we were getting so much information at such a fast rate that not all parties had received all the data by the time it all came in at the end of the day Friday. (No resentment here - I am quite thankful that Dr. Oeffinger is so helpful in expediting and pulling strings to get all the tests moving quickly.) So first thing this morning, when the doctors put their heads together to assess the right direction, it was obvious to them all that immediate surgery was not the right path. The surgeon, who had originally worked me into his schedule Wednesday, had not yet seen the CT Scan showing the liver problem. And the oncologist, Dr. Perkins, wanted to talk with me today about our options.

Christine and I met this afternoon with Dr. Perkins. I keep telling Christine she has the day off to rest and then I wake her early and tell her we�re heading back down for another test or meeting. I am remembering that flexibility is one of the best traits to develop when you�re involved in battling cancer. She's been a great trooper - more than that a great support. Anyway, we actually came away slightly encouraged from the meeting. After a couple of radiologists examined the CT Scan, doubt arose as to whether there are many small lesions on the liver or one big strange one. The latter could be liver cancer, instead of spreading colon cancer. (Believe it or not, this would be good, as �two primaries are easier to deal with the one primary that has spread�). In addition there is what looks to be a large mass in the bladder. The problem with that is that I have absolutely no symptoms there, and colon cancer does not spread there. So he�s not really sure what that is. On top of all that, Dr. Perkins is perplexed that I am presenting in such a healthy state. If this is all cancer spreading like wildfire, then my health should reflect that. I am merely weak and that is attributable to my low red blood cell count. He indicated this was a good sign, as it improves chances of survival when cancer like this is caught when in my current state of health. The colon cancer is still clearly in the picture. But since it is not interfering with my digestive function, then there isn�t a huge rush to get it out of there.

So briefly:
(1) No surgery yet as we need a much better diagnosis. Wednesday surgery plans are nixed.
(2) More tests this week including liver biopsy and visit to urologist.
(3) I�m going to get intravenous iron later this week to restore my strength.
(4) The best path may indeed be chemotherapy first for several months to stabilize or shrink the tumor(s) so that surgery can accomplish more.
(5) I�m going to MD Anderson later this week or next week to talk with GI specialists there to see what they think once all the tests this week are complete. Dr. Perkins is setting up the appointment.

Sorry this is dry and medical. I�ll write more later about what is going on in our hearts and our community as we cling to Christ during this time. For now, I wanted to let people know the change of plans.


Possible surgery delay

Dr. Oeffinger called me this morning after talking with a top area oncologist. Bottom line is that there may be advantages to treating the liver with chemo first so that more can be accomplished during the surgery. I'm meeting with this oncologist, Dr. Perkins, at 3p.m. today. More to come...

Sunday, June 1, 2003

My email

My email is hewlett @ ti . com


Specific prayer requests

For background on my condition, read the "May 2003" archive messages.

For those who would like to pray for us, here are some specific requests that we are pleading that the Lord will provide with the coming surgery.

- Skillful removal of tumor and decisions about what to remove and what not to remove with the liver.
- Skillful reconstruction of colon and sewing up of the whole operation
- No complications � no infections, phlebitis, or pneumonia
- Christine�s strength, stamina, and lack of migraines and pain in the coming weeks (she has chronic migraines and pain)
- My perseverance in walking and post-surgery exercises and tolerance of pain
- Quick, thorough recovery to prepare for chemo
- Wisdom of oncologist (and us) as we decide on treatment protocol
- Complete, miraculous, healing.
- Our encouragement in Christ in this trial