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.

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.
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.
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.�


Jim MacNally said...

Thanks for atking the time and the energy to bring all of us up to date as to what is going on. Thank you also for sharing your fears and frustrations as well. Perhaps Dr. Xiong needs to be told that he only "practices" medicine and that inspite of what he may think he is NOT the Great Physician. We know who is and you and Christine are in His hands.
We are praying and are here for you.

Dan Christen said...

It is so important that you share with fellow brorthers and sisters in Christ ; all the things you are fearing and feeling. Everybody is following your progress,and will know excactly what to pray for.
I suffer from migraines too and I know the stress that Christine is feeling is contributing to her headaches. In addition you my prayers for you and your fears, pain and suffering, I pray God can calm Christine and enable her to be there for you and not be suffering with the migraines.
Dan and I are following your progress : Thank you so much for taking the time to make these entries .It's also important for you to vent.
We love you and are praying for you and Christen ; and the rest of your family.
Dan & Syd

Carl said...

All this gut wrenching turmoil you and Christine are going through is more than I can get my slow brain and dysfunctional emotions around.
But what does come to mind is what my even- tempered steady Texas son-in-law has said to me on many less harrowing occasions :" Carl, this is going to make a great story." I never heard that from anyone else during trying times. I thought maybe it's a Texas thing, but further thought told me Greg's experienced a lot of trying times in his life and has learned to cope with trying times and this is one of his ways of doing it.
Another disjunctive thought came to mind. When Jesus heard that his friend Lazurus died he told the apostles that it was a good thing because now the Real Power of His Father in Heaven would be demonstrated.The apostles thought he had lost it; Jesus knew all the time that he would raise him from the dead. I think God answers prayers of His believers( and we sure got a bunch praying)in His own way and time. If Greg and Christine aren't tuned into His Will, I guess I don't know who is. I guess what I'm trying to say is I know you and Chris are going to get through this and it will Glorify Him, because I know that's what you two live for.

an old friend said...

Remember that while we pray for you, we also pray for your doctors - even Dr. Xiong. I pray for their skills, for their discernment in your situation, for God's hand to be on them. God is using you and will use you for His glory, and who knows how God can use all of this to change one heart. It sounds like Xiong needs a little heart surgery!
God's healing hand upon you. What a great testimony that will be for one who appears to be so far removed from the True Healer!

Bill Hitzrot said...

Greg and Chris: You both are a lesson to us in Christian Faith. Peg and I pray for you both every day. Thanks for keeping us posted on your progress. God bless you. Bill and Peg Hitzrot (long time friends of Sue and Carl)

Vince Corvino said...

(Ps.139:14-18)I will praise thee; for I am fearfully and wonderfully made: marvellous are thy works; and that my soul knoweth right well. 15My substance was not hid from thee, when I was made in secret, and curiously wrought in the lowest parts of the earth. 16Thine eyes did see my substance, yet being unperfect; and in thy book all my members were written, which in continuance were fashioned, when as yet there was none of them.
17How precious also are thy thoughts unto me, O God! how great is the sum of them! 18If I should count them, they are more in number than the sand: when I awake, I am still with thee.
Greg, the psalmist said it much better than I.

Andrew Russell said...

greg, i found this great resort on the beach that costs $70 a night (per couple) including two large meals. That's where we'll go when you come to visit. the reason it's so cheap is that it's also a school for all the hotel workers. so they get to practice serving you. one of them brought me my requested thousand island dressing in one of those fancy tripple salad dressing containers. i asked what the other two types hoping i would get lucky and strick a blue cheese. the response was a blank stare followed quickly by "um, i'm sorry, i haven't been given that information." so i stuck with the thousand island.

Roland/Janina Lindh said...

Our compant's servers were down for a considerable period of time so I have not had the opportunity to provided a response beyond our telephone call. It is hard to be obedient to the command of Jesus -"Be Not Afraid..." But nevertheless it is a command, and the only comfort I can give is that being obedient to this command at this hard time is the core of Christian living. Christ once said that this sickness is not unto death but to reveal the Golry of God. It was hard for that suffering person to give thanks for the many years of termoil but the end result was his healing and God's revealed glory.
Our prayers are that yours too will eventually result in seeing His Glory and receiving His healing.
I only suggest the following. Each morning, by prayer remind yourself that you have been elected In Christ. Give Him the thanks and the praise that such Grace deserves - and then live out the difficult day with the picture of the cross before you. And know the prayers of God's people will go before you. And the scriptures remind us that "...the prayer of a righteous man avails much."

Jan said...

Greg, remember God makes all kinds of people. Some of the most brilliant surgeons and technicians are the least personable. But, if God can reach through the hands of a cold heart with the best oncology brain right now, so be it. You need the best! And, thankfully, you seem to have a great interpreter to help get you through the translation frustruations. God can work in strange ways... Our love and prayers continue for you and your family.

Karen Clayton said...

This verse was underlined in Bill's Bible:
I Peter 5:6 "Humble yourselves, therefore, under God's mighty hand, that he may lift you up in due time. Cast all your anxiety on him because he cares for you."
Christine, The ladies' evening Bible study prayed for you tonight. We love and miss you.
Your sister in Christ,

nancy brunone said...

Greg & Christine, you have a group of ladies praying for you in Saudi Arabia. Thanks for the detailed update on your treatment. Will continue in prayer for your treatment and healing, for strength and relief from pain for Christine, and for healing for Dr. Xiong from his prison of indifference.

mark hewlett said...

Greg, since I only live 1 1/2 hours away is there any way I can help out with logistics, personal needs, or anything else.

Carl said...

Out of the blue, my neighbor, Dave West told me his little boy Sawyer got on his knees last night and prayed for your healing. My priest grabbed me at Mass last week and said he's praying for your healing. People that I never thought prayed are also praying for healing. It's kind of neat, all this prayer, isn't it?

Brian Marquis said...

Missing you, my friend...
We are doing fine at smal group, but there still remains a djembe-sized void in our musical accompaniment ;)
Will be praying for your treatment/surgery and for Dr. X, too. Take courage, for it is Christ who strengthens you, even when you are weak. Even now, your words are an encouragement for others, myself included.

John Slaughter said...

I've been following the site and continue to pray for you.
I did a little poking around the internet and it sounds like your oncologist is good at what he does. Don't let his poor bedside manner get you down. I think it goes with the territory. I would have a very difficult time in this field. There is no question that I would worry myself sick second guessing every decision I made.
It's fairly quiet around here this week. We did have some demos earlier in the week which went well.
hang in there,

Sally Tapley said...

This is Mary Tapley Rynsburger's mother. I remember you both well. We are praying for you here in Atlanta where we now live.
I especially want to commit to pray for Christine. Just today we heard a sermon where our pastor quoted from a book written by the father of a young cancer patient, entitled something like: The Prayers of the Secondary Sufferer. So, Christine, this is for you: know that you are upheld in our prayers and thoughts day by day, not only for you and Greg together but for you and your pain and sorrow.