First chemo round complete

This morning, I took my last dose of chemo for this round. I am quite happy today, and to tell you the truth, proud, to have made it through this first round day by day. Every day I got a little more fatigued, a little more queasy, and a little more nauseated. Last night I had no appetite to eat dinner at all and forced down a bowl of soup. My goal has been simple every day: Eat. Rest and conserve energy. Stay inside. Work from home. Get through the day.

It is quite an odd feeling to force myself to take pills that I know are causing me to feel lousy. One part of my brain says �take it � it�s for your good.� Another part says, �don�t take that � you know how you felt last time you took it.� And still another says, �if you keep getting worse with these pills, where are you going to end up?� In each case for the past fourteen days, the �first part� of my brain succeeded. And now my body gets a rest. Typically, the rest would be for one week, but in this case, because of the procedure on the 29th, I will get a two week rest.

I am most grateful that I did not have the serious side effects that would have forced me to stop taking the chemo. On Saturday, I did begin developing mouth and throat sores. I called my doctor and he said that if it got worse by the next day, I should call him back and I would temporarily have to stop the chemo. I thought to myself, if the sores were caused by the chemo, and if I continually take the chemo, then how could the sores possibly do anything but get worse? So I rinsed with a warm water solution of salt and baking soda, as he suggested, and I prayed. Remarkably, they were better on Sunday and gone by Monday. I must admit I was very surprised. But also thankful.

Side effects minimal so far

Yesterday, Dr. Xiong called to check up on me. We had a good conversation about future plans and current chemo side effects. He said he was quite encouraged that I am not experiencing very serious side effects. Serious side effects require temporarily delaying the chemo. Apparently, I'm on the good side of the bell curve of typical response. Currently, the worst effect is that I get an upset stomach after taking Xeloda (just after breakfast and dinner). The feeling is similar to how I feel after eating a plate of three-alarm buffalo wings at Jack Astors. The difference is that after a couple of those wing experiences, I vowed never to eat another. But with chemo, I keep taking the drug every day. With each dose, Christine and I pray for its effectiveness against the cancer. One person told me to imagine Pac-man munching tumor cells when I take chemo. But that just reminds me of those annoying little Pac-man sound effects.

Dr. Xiong also told me he thinks the increased physical weakness is simply due to the chemo rather than the low RBC. It's inconvenient, as I'm not good for much physical activity, but it's really nothing intolerable. As long as Dr. X isn't concerned about this, then I'm not.

I'm glad to be back at work today, catching up on activites that I just left hanging a few weeks ago. I'm working at home to conserve physical strength.

Back in Dallas

We arrived back in Dallas late last night. It was so good to be back in our home. There were a few more speed bumps and developments along the way.



My parents drove down to accompany us this weekend and to drive back with us. My mother ended up spending Sunday night in a hospital herself, as she fainted and cut her lip and they wanted to hold her overnight for observation. We were relieved to hear that there were no obvious signs of major problems and that she was cleared and will follow up with her doctors in Dallas. We were also glad they could join us the last few days, even with the added craziness!
We had figured yesterday's (Tuesday's) appointment with the colon surgeon, Dr. Rodriguez, would be uneventful - sort of a getting to know each other as there will be surgery down the line. The appointment was at 10 and we figured we'd be on the road by lunchtime. Can you believe we would think like that?
A moment into the discussion with him (at around 2:00), he said he would like to do a procedure to help me but "unfortunately" I was already taking chemo. He cannot do it now that I have already begun and that puts me at great risk of a "nightmare" situation.
"Unfortunately!?!?" Do these guys even talk to each other? I didn't come up with this plan - one of his own colleagues put me on chemo! I'll be honest with you. I wanted to pick up the snazzy LCD flat panel monitor with the high res image of my liver and begin hitting everyone in the room, hopefully striking as many livers and colons as possible. However, I felt this might reduce my chances of getting the "best" care, so I refrained. I said something like, "Well did Dr. Ziong talk with you about this before putting me on chemo?" His reply was "Don't use aggressive language. There's no need to cry over spilt milk." Christine and I swallowed our indignation about the unbelievable lack of communication and administrative organization in this department because we realized there was no need at this point to discuss this with the surgeon. Our priority was to hear him out about what to do now that I am "unfortunately" on chemo.
Dr. Rodriguez is very concerned about the possibility of obstruction of my digestion at the tumor site. If I were to need emergency surgery at my current blood count levels (mostly liver enzymes and RBC), plus the additional blood count problems that chemo will likely cause, then the situation would be, in his words, "a nightmare". He called such a surgery "very dangerous" and as having "high risk of very serious complications." Also, such a surgery could be enough of an emergency that it might have to be performed by an on-call surgeon at a local Dallas emergency room, rather than by Dr. Rodriguez in Houston. We do not want to have our hand forced like that.
So what he wants to do is go in and investigate exactly how obstructed it is now and possibly (hopefully) put in a stent or use a laser somehow to ensure that I will not get obstructed until after the chemo when we want to do surgery at the most strategic time for my treatment. This is not surgery - they can do it all through instruments up my you-know-where while I'm out. The main risk is perforation, because they try to navigate the scope through the tumor to the other side and then put in a stent. Needless to say, bleeding would not be good for me right now.
Dr. Rodriguez wanted me to postpone chemo for a couple weeks before doing another round of chemo. Then he spoke with Dr. Xiong. The two of them together decided that the delay was not desirable, as the risk of holding off chemo was greater than the risk of problems from this procedure. They scheduled this scope/stent procedure for July 29. In the end, I'll only be delaying the chemo schedule five days. (currently, the key drug is taken on a 21 day cycle twice a day orally for 14 days, followed by a 7 day rest).
The five day delay is in part because Dr. Rodriguez wanted to schedule this with who he considers to be the best, most agressive, MD who performs such procedures at MDACC. We were very pleased to hear that he was available on the 29th, which is why we will be doing it then.
In the end, we are glad to be home. And I do feel that even with the astonishing insensitvitiy of doctors, and the truly unbelievable administrative confusion, which caused many delays and unnecessary pain, I am indeed in the hands of some of the most skillful cancer specialists in the world. They found things I'm not sure would have been found and they are doing creative things (like this stent) that were never mentioned in Dallas.
Between now and the 28th, when we head to Houston again for the scope procedure and next round of chemo, I intend to live my life as fully as before. We all live under the shadow of counted days on earth. Everything is trival in light of the fact that we live such short lives. The only meaning I found in living before diagnosis is really the same meaning I find now - to work and to live "as if working unto the Lord." I have no where else to go.

Chemo on the Fourth of July

A lament. Of Greg.

(a blues/country tune)

Stuck in the wheels of a big machine.
Cogs as slow as I ever have seen.
The plan don't fit any other way
Than to hook me up on Independence Day
So ya'll have fun
Don't wait for me.
I'm at Houston's M.D.A.C.C.
I'm hangin' on, but I might just cry
For I'm takin' chemo on the Fourth of July
You can watch them works firin' in the sky
I'll be takin' drugs, but I won't get high
Irinotecan's killin' them cancer cells
And Xeloda's sendin' tumors straight to %*!@
So ya'll have fun
Don't wait for me.
I'm at Houston's M.D.A.C.C.
I'm hangin' on, but I might just cry
For I'm takin' chemo on the Fourth of July

Never thought I'd be so glad to take chemo

It's been a week of some more ups and downs, but the good news is that I am now on chemotherapy. The cancer is in retreat as the counter-offense begins!

Monday
The beginning of this week brought some good news. Because Dr. Xiong (incidentally, pronounced "Zhaung") is not an official oncologist for the clinical trial, I was switched to Dr. Lin, with whom we met Wednesday. He and his P.A. turned out to be very good in our estimation - both in terms of their thorough explanations and their apparent knowledge. Furthermore, on Monday we heard from the research nurse that it was likely that I would get on the trial.
Tuesday
Tuesday, I had the endoscopy in the morning. It was clear - no problems in the esophagus, stomach, or esophagus that would preclude me from the trial. Then I went to Methodist hospital for the port-o-cath surgery. It is a double-coin shaped pod (like my old contact lens case) just under my skin beneath the clavicle. It has two catheters than run down towards my heart. The surgery was for 1:30 and I was prepped by 2:00. The surgery didn't occur until 8:30. I was actually quite content with the wait, as I had the word of the surgeon that "he would fit me in" because he thought is was a terrible idea for me to go all the way to Dallas to get the surgery. The surgery was over late enough that instead of sending me to recovery, they checked me in for the night. This was of course not what we planned, but that was the last piece necessary for the trial so I was glad to do what they wanted.
Wednesday
Wednesday came the bad news. Due to an allergic reaction I had several times while taking cisplatin for my cancer 20 years ago, I cannot join the trial. Cisplatin is a cousin of oxalyplatin, which is one of the three baseline drugs with which PTK787 is tested. The managers of the trial have made it clear that if you so much as have had a hypersensitivity to any related drugs, you cannot join the trial. Furthermore, we found out that because I would not be on the trial, I would return to Dr. Xiong. However, upon meeting with him to discuss our options, he was a very different man. He did not have a clinic schedule Wednesday and was far less rushed. He wanted to explain the options and side-effects well. Perhaps this was in part because Judy had complained to Xiong's staff after she sat with us on Friday to experience with us how we were treated. In fact, when we entered the clinic on Wednesday, I felt like a food inspector walking into the kitchen of a restaurant. All of the sudden there was an increase of attention and smiles.
The protocol
The protocol we decided upon, which Dr. Xiong believes is the best approach (and a little better than the trial if I had received the placebo) is as follows:
Day 1: Take intravenous irinotecan. Begin oral Xeloda (oral form of 5-FU)
Day 2-14: Continue oral Xeloda, taken at home
Day 15-21: give body a rest from chemo
Repeat cycle several rounds, then get CT scan to see if liver tumor is shrinking.
There's a long list of probable and improbable side effects, which I won't go into now. The staff at MD Anderson tell me that their experience shows that different people have widely different side effects, and at different times during the chemo protocol. I am praying that I will especially not have the bad ones, which require postponement or termination of the particular drug. More than that, of course, I am praying the drugs will be very effective. Incidentally, the irinotecan can have very serious effects during the first treatment. Fortunately, I did not receive these for my first dose.
This week, we moved from the Jonsson's house to the Rotary House, a Marriot-managed hotel that connects to MD Anderson. This gives us close access in the case of any chemo side effects or if my fever begins to run high again. Thankfully, my fever has been well under control this week. The Rotary House also has amenities geared towards cancer patients, such as MD Anderson staff on call, a video library, and connection to MDACC scheduling computers. Finally, it saves time and energy for Christine and I, which we have both been sorely short on this week.
We will be here until Tuesday, when we will meet with Dr. Miguel Rodriguez-Bigas, the colon surgeon. It is advantageous for him to be familiar with my case should the need arise for immediate surgery.
Looking forward
Finally, I'll share a little of our excitement with you. In February, Christine and I planned a 10-day vacation to Teton and Yellowstone for our tenth wedding anniversary (We were married Dec 1992). It is scheduled for late August. Since the original diagnosis, we have been hoping in the back of our minds that once the chemo schedule was made that it would not conflict. All the other protocols discussed would have required us to cancel or significantly shorten the trip. It turns out that if we can stay on the current chemo course with no complications, our vacation is planned right where it needs to be to fit between treatments! We are continuing to look forward to that.
Thanks for your continued support and prayers. We look forward to seeing our Dallas family and friends when we return next week.

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.�

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.