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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.”