Thursday, June 21, 2007

A Peek Behind the Curtain

While working, I always enjoyed getting a chance to see where the rubber met the road. This took me to visits at a steel mill, a call center, a data center, a pharmaceutical plant, an air traffic control tower simulator, numerous movie sets, a beer plant and cheese manufacturer (that was pleasure, not working), a solar photovoltaic manufacturing facility, a check processing center, a bank vault (with $20 million in cash), numerous blood centers, a coal mine, a coal fired power plant, a nuclear power plant (“A” list tour including the cooling pools), and now most recently a cancer research laboratory. You know how in the Wizard of Oz towards the end of the movie when Dorothy pulls back the curtain to expose the wizard, it was sort of like that with the cancer lab, but it was real.

We met with the cancer lab manager who gave us an “A” list tour. We saw how tumor cells were brought into the lab and where live cancer tumor cells are grown into cell lines. Cell lines are used during assessment analyses to determine drug effectiveness and cancer growth pathways (e.g., how cancer spreads from the primary tumor site to other bodily sites like the lymph nodes when implanted into lab animals). We saw test tubes, met cancer research doctors and technicians, saw high powered microscopes, deep freeze vats used for cryo freezing of cells at about minus 260 degrees centigrade, a cold room, and more. Cancer research is a very expensive, tedious, and laborious process, yet so important. We thank the individuals who allowed us this peek behind the curtain. There is so much taking place these days and it all requires funding, ethical approvals by internal review boards, grant writing, and lots of paperwork. For my sake and those that come after me, we owe a lot to these hard working, passionate, and dedicated individuals who are trying to make life better for others.

Post Surgery

Surgery was completed on schedule on Tuesday at about noon. It lasted about 2 – 2.5 hours in the operating room and went well. I spent Tuesday night in the hospital and was released Wednesday morning. All wound drains and IVs were removed prior to my release. That is a big plus for me, not having any unnatural attachments in my body. The incision is on my right side neck and about 5 inches long. It was closed by steri-strips. The one cancerous lymph node was removed. My doctor looked at the lymph nodes around it and balancing quality of life issues with a more severe surgery left them in place based on seeing no evidence of cancer. While I was under general anesthesia, my doctor also took a good look at what he believed were my primary cancer sites in the base of the tongue and larynx areas. He said these looked good and saw no evidence of cancer tumors in these areas as well. They had shown up as cancerous hot spots in PET and CT scans in early December 2006. The chemo over the past 5 months either shrunk them to undetectable levels or destroyed them altogether. I’m hoping for the latter. My surgery recovery will be a week or two. This is almost trivial when compared to the surgery recovery from July 2006. Officially, I’m guessing I would be classified as having no evidence of disease (NED) right now. The big question in most cancer victim’s minds is how long will this respite last. The longer one goes without new cancer tumors the better the chance that the cancer was eradicated from the host’s body. At two years, the doctors begin celebrating. At 5 years they call it a cure. I had two prior periods in the last 2 years where I was classified as NED. Each lasted about 4 to 5 months. We’ll keep our fingers crossed and hope for longer this time.

As to next steps, in about 3 – 4 weeks I’ll begin more chemo to get at the micro cancer cells that are probably still in my body, but at undetectable levels. Remember, my doctors said I was at high risk for a recurrence. I’ll also be rescanned within the next month or two. Periodic scanning will be a way of life for me in the foreseeable future.

Thanks everyone for staying up to date with me via my blog. I have one more entry to write either today or tomorrow. After that, the entries will more than likely be about once per week or when something new pops up. Take care.

Thursday, June 14, 2007

Surgery and Other Notes of Interest

I visited with my surgeon and chemo doctors yesterday. We had all done a good deal of preparation for this meeting. I had prepared a one page assessment, options, and questions, pros and cons per option document to help me work through what was the best next step. There were 5 options ranging from "doing nothing" on one end of the spectrum to "doing more chemo now followed by surgery after the chemo" at the other end of the spectrum. I sent that to my doctors last Friday evening. My surgeon responded back on Saturday. He answered all of the surgery-related questions and provided his recommendation. He had also had time to review my PET and CT with contrast scans from the previous Wednesday and confirmed the preliminary results. One new piece of information though was that the infected lymph node tumor in my neck had grown slightly since my last scan 6 weeks ago. It went from .7 x .9 cm to .9 x 1.0 cm. As such, it is still slightly less than a centimeter (about 1/3 of an inch), but the fact that it had grown (42% by my simple math) while receiving intense weekly chemotherapy confirmed that the chemo was not effective on this tumor. The chemo had been effective on all other macro cell cancer hot spots. One can have variations of similar cancer cells in their body and chemo can be effective on some and not on others. This is a very complicated disease. Cancer educational tidbit… A macro cancer cell tumor is one that can be detected by today’s scanning technology. A micro cancer cell is cancer, but can not be detected by today’s technology, but it will continue to divide and eventually become a macro cancer cell tumor. In addition to the increased size of the existing tumor, it had also increased its metabolic rate by about 50% since the last scan. This means it is consuming more energy than normal cells and at a faster pace. Based on all this, my surgeon recommended a limited neck dissection surgery and performing it sooner than later. When we met yesterday, it took about a minute for us to agree on a course of action and timing. My only real question then was how to tell if future chemo treatments were effective since we did not have the barometer of the lymph node tumor to provide that insight. My chemo doctor joined us. Both he and my surgeon agree that I am at a high risk of a recurrence due to currently undetectable micro cancer cells. They also both agreed that surgery was a good next step, but it should be followed by more chemo. I asked how we would know if the chemo was effective without having the lymph node as a barometer. The scenarios: 1) if I don’t have micro cancer cells in my body, then it was not worth doing the chemo, but we’ll never know. 2) If I do have micro cancer cells in my body and they are destroyed by the chemo, we’ll never know. 3) If I do have micro cancer cells in my body and they turn into detectable tumors, then we’ll know that the chemo has not been totally effective. But, the chemo may have controlled them longer and made them less aggressive, but we’ll never know. I guess you get the theme here, we’ll never know.

Surgery is scheduled for Tuesday. I had a similar surgery following radiation treatment on the left side of my neck about a year and 8 months go. 17 lymph nodes in my neck were removed. We’re hopeful that this will be a bit less invasive by removing the one infected lymph node and possible a few around it. It will require full anesthesia and one (or possibly two) nights in the hospital. The operation should be about 2 hours. A piece of cake compared to the 12 hour operation last July, but still not trivial. Surgery appointment times are not provided until the night before the surgery and actual surgery time on the day of surgery can still be highly variable depending on many factors outside of my own (e.g., availability of an operating room if a prior patient’s surgery ran longer than anticipated). So, there you have it. Any questions, please feel free to post them or send me an e-mail. Now onto some other areas that may be have interest.

I visited the Leroy Sievers’ web blog on June 11th. He was featured on the Ted Koppel Discovery Channel “Living with Cancer” special in early May 2007. I wrote about the special on May 8th. Leroy has cancer and has a cancer blog on the NPR website. It was this special that provided the impetus for me to create my web blog. For those that may be interested, Leroy’s URL is:

During the special, Leroy reported that he was classified as having no evidence of disease (NED) due to a very innovative, yet unproven, surgical technique named radiofrequency ablation. This procedure was used to remove a few inoperable lung tumors. These tumors were going to kill him and do so quickly. The surgery used some magnificent techniques to insert a needle into the tumor; the needle was guided by use of a real time imaging device, and then once inside the tumor it was heated to kill each tumor. It looked so promising. Plus, instead of cutting into the body cavity and the lungs, which would be major surgery (and for some reason I do not understand, inoperable), it was done in two hours as an outpatient. I asked my surgery doctor about using this technique on my neck. He said he had never done one, so would not do one on me. That prompted me to go out to the web to search for use of this technique on Head and Neck cancer patients. I found an article from 2002 from a doctor at a very well known hospital in New York who had used this procedure on 4 head and neck cancer patients. The article said it showed promising results and to call or e-mail him as he was looking for additional patients. I called and e-mailed him. I provided a brief history of my background and current status. He is now the Chief, Head & Neck Division, Department of Surgery, for this hospital. He said the procedure had proven to be somewhat risky and not uniformly effective. As such, they closed the clinical trials until more experiments could be performed on lab animals. No lab tests were currently in progress. He also reported that Head and Neck cancer was not high on the list of cancer killers (compared to other cancers such as lung or breast cancer) and as such received limited funding. Basically, once again, the big business of cancer. He was very prompt in his responses. We traded about a half dozen e-mails over a two day period. I really appreciated his insight. The message from me here is twofold, first be proactive if ever in a similar situation and second, don't give up. Now, back to Leroy Sievers. On his June 11th blog entry he reported that a scan he had had the previous week showed new tumor growth. I, along with 63 others posted comments to his blog that day. On June 12th he did a fantastic job of summing up how he feels and probably how I will feel if my cancer comes back. The next two paragraphs are from Leroy’s blog.

“Now I sit here trying to make sense of my latest news, and figure out where to go from here. It's a little depressing, and now I understand one of the reasons why. Cancer has taken away much of that mystery from my life. I liked not knowing where the adventure was going to take me. I didn't want to know what was going to happen next. I never ever look at the last page of a book ahead of time. I don't fast forward to see how a movie turns out. I wanted my future to be as wide as my imagination could make it. Thinking that the future was still to be formed, that there were a thousand different paths that could be taken, all that made me smile.

Instead, cancer has brought too much certainty. I have a pretty good idea of what the next two or three months will be like. And I can guess what will happen after that. I realize that the disease will just keep attacking me. There may be brief respites, like the one I just had, but I expect the assault to be unrelenting. I know what the procedures will be like, what the drugs feel like, how my body will react. I know too much. And like it or not, I have a pretty good idea of how this is all going to end.”

That is the end of Leroy’s quote.

For me, I don’t think I’ll die this month and probably not this year, but when I do, I know it will be sad and it will be too soon.

On a more positive note, somewhat Hollywood-ish (every story has a happy ending – they didn’t end The Sopranos this way BTW) some of the chemo fatigue has lifted and I have begun working out with 5 pound weights. A far cry from the 35 pound weights I used before cancer and 20 pounds weights prior to the December 2006 chemo, but I’m beginning to feel less fatigued and also beginning to feel a bit better.

I will probably not post again until after my operation next Tuesday. So, if you don’t hear from me for a week, no worries, there is just nothing really new to post. Take care everyone.

Wednesday, June 6, 2007

My Next Steps

This paragraph deals with the day’s logistics at the MD Anderson (MDA) Cancer Center; the next paragraph is a summary of the results. This paragraph is a bit lengthy. Feel free to skip it if my logistics really aren’t your thing. A friend picked me up at 5:40 AM and dropped me off at the hospital. Thank you. The PET scan began on time at 6:30 AM. The purpose of this scan in my case is to determine if the cancer has spread anywhere else in my body. There is no eating or drinking (except water) for 6 hours prior to a PET scan. I was injected with a liquid in which I believe a sugar substance (glucose) is attached to a radioactive molecule. You then need to rest for 60 – 90 minutes. No TV, no music, no reading, no moving. You’re in a little room about 8 by 5 feet in a Lazy boy-type recliner. It’s lights out. I may have dozed off for a bit. The actual scan takes about 25 minutes. I was through at 8:45. I had them leave the IV in hoping I could avoid another needle stick later in the day. I stopped by the CT scan area at 9:00 to see if they could move my scan up. It was scheduled for 5:30 PM. This test is more specific, in my case, to my neck area. They said they might be able to, but I needed my blood test first. I had blood drawn at 9:15. They had to stick me again because the IV line I had was used in the PET scan and could be contaminated. I went back to the CT scan area. They said they could take me sooner, but I needed to wait until my blood analysis was finished. They post the results online within MDA in anywhere from 30 minutes to 2.5 hours. I visited the dental oncology clinic as a walk-in. I had tried to see them on a few occasions during the past 6 weeks, but either they or I were running late and it had not worked out. I lucked into the shortest wait ever for this clinic. My dental oncologist examined me and provided the advice I was seeking. I was back at the CT scan area by about 10 AM. Unfortunately, my blood analysis results were not posted until just before noon. As soon as they were posted, I had my CT scan with contrast. They were able to use my IV from the PET scan. They injected iodine into me and scanned my neck and head area. I was done by 12:30 and checked in for my 1:00 PM chemo doctor’s appointment. My wife joined me shortly before 1:00. We were seen at about 2:15. There was a preliminary radiologist’s dictation of the CT scan results by this time. That timing is pretty good, less than 2 hours after the scan. There were no preliminary results on the PET scan yet, but my oncologist brought up the images on the computer in my exam room and did a real-time preliminary assessment. We left MDA at 3:00 PM, about 4 or 5 hours earlier than had been scheduled. Yahoo.

The preliminary results showed no surprises. Final results take 3 to 4 days. This allows the radiologist to review this scan versus prior scans and to discuss the results with my doctors. So, I qualify what I write here with the emphasis on PRELIMINARY. The PET scan showed no cancer in my body outside of the lymph node in my neck. The CT scan showed the same thing. There is one lymph node under the right side of my jaw line which shows increased metabolic activity. In layman’s terms, it is consuming more sugar than normal cells, indicating that it is cancer. So, my chemo over the past 5.5 months has had a positive effect, but it has not eradicated the disease from my body. So now what?

The decision tree here becomes very complicated. The chemo course I had has plateaued. So, leaving me on that longer isn’t really useful. It is actually harmful. That lymph node and a few surrounding it could be removed surgically. The surgery would require me to be under full anesthesia, but it is not a major surgery, just one or two nights in the hospital followed by lots of physical therapy to regain movement of my neck. The issue with removing the lymph nodes is that there is probably cancer still elsewhere in my body; it just isn’t big enough to be seen by the current scanning technology. My surgeon doesn’t want to do any more surgery on me, but he will if the chemo doctor and I decide it’s the best course of action to pursue. If he removes the lymph nodes, there is a very good chance it will pop up elsewhere in the near future and the place that it pops up will be difficult to treat surgically. My chemo doctor will talk to my surgeon tomorrow. Ideally, he would like to put me on the chemo drug Erbitux. Unfortunately, I tried this drug in December and had an immediate adverse and severe allergic reaction. This is the latest approved chemo drug for Head and Neck cancer. I’ve heard that less than 10% of people are allergic to it. There are other promising drugs out there, but they have not yet been approved by the FDA for my type of cancer. They run about $400 a day for a pill. (And I thought the Tarceva at $200 a day was expensive!) There are also some phase I clinical trial studies which are one step above tests on animals and are really a crap shoot. I’ll talk to my chemo doctor on Friday, and I’m scheduled to meet with my surgeon this coming Wednesday. Together we’ll unravel this tree and work up my next steps. Ideally, we’ll find a chemo regimen that will take care of this lymph node and eradicate the other unseen cancer. This may be a pipe dream, but I’m an optimist.

Monday, June 4, 2007

What Drives Me Crazy

Before getting into What Drives Me Crazy, I’m wrapping up my countdown chart today. I felt relatively well on Sunday and gave myself a 7 on the AFI (Actual Feeling Index) scale. A 7 means that I can tell my stamina is beginning to return. I’m guessing I’m still a week or so away from being a 10. A 10 means I can begin to really rebuild my stamina by starting to exercise. Prior to chemo, I was exercising 3 times per week for 2 hours a session and included: cardio, strength, and flexibility. I’m guessing it will be a month or two before I get back to the point prior to chemo, but as of right now, I believe I can actually get back to that point. Thanks for all of your comments on the graph. I needed to put it together for my own sanity. It was like being able to see the light at the end of the tunnel. The graph reminded me that I probably only had so many days left until the intense fatigue began to lift. As of yesterday, I think I was there.

Okay, so what drives me crazy? I’m a planner and I can’t plan anything long term. My current planning horizon is 1 - 2 weeks out. I think this is common for people in situations similar to mine. Not only can’t I plan, but those close to me can’t plan either. This includes mostly immediate family and close friends. The closer the person, like my spouse, the bigger the impact becomes of not being able to plan. I’m really hoping to begin traveling again within the next few months. It will be limited travel and I’ll need to plan carefully how to travel (e.g., how and what to eat), but it will be travel. But, right now, I can’t make any plans. What I’m trying to get across is the point that this is confining and a bit frustrating. Please don’t take it as complaining. This lack of ability to plan long term has been one of the biggest impacts.

We had a visitor today. She lives far away, but made the effort while visiting her mom in the US to fly another few hours and visit us for the day. We had a great time catching up and spending time with each other. We got to hear what was happening in her world and she got to see what was happening in ours. We ate, talked, and even worked on the pottery wheel together for a bit. Thanks for coming.

Wednesday is a big day at the hospital. I’m scheduled for a PET scan at 6:30 AM, (it will take about 2.5 – 3 hours), an oncology clinical visit later in the morning, some blood work, and then a CT w/contrast scan at 5:30 PM. The CT/w contrast scan will end around 7 – 8:00 PM. The results from these scans will not be discussed with me until the following Wednesday. I’ll probably update the blog again late this week and then not again after that for another week. It is at the meeting a week from Wednesday, on June 13, that we will determine the next steps in my cancer treatment. I anticipate some surgery this month, but won’t know the timing and extent until mid-June. Take care everyone.

Saturday, June 2, 2007

Stamina Recovery Continues

I felt relatively well the past two days; giving myself a 6 and 6.5 on the AFI (Actual Feeling Index) scale for yesterday and today respectively. I’ve been out of bed, but still moving a bit slowly. I made it out of the house today for the first time in 3 – 4 weeks to do something other than go to the hospital or doctors. I went to Sears to get a part for a very small home repair project. My wife drove as I’m still not feeling up to driving just yet, but it felt great to be out. I’ve cut back on my pain/anxiety medicine by 25% in the past 2 days and will probably cut back further in the next day or two. I’m eating again and have gained back about 4 pounds since Wednesday. I’m sure some of that is re-hydration, but I’ll take whatever I can get. I keep feeling for new tumor growth, I think that is natural in my situation, nothing new at this point. I’m nearing the end of my latest Michael Connolly book, A Darkness More Than Night. It draws on a lot of characters and situations from past novels. This is a good author to read in the chronological order of when his books were published. We have a special friend coming in on Monday and are very excited about the visit. That’s it for now. I hope everyone is having or had a good weekend.

Friday, June 1, 2007

Stamina Recovery Begins

I felt relatively well yesterday and spent most of the day out of bed for the first time in over two weeks. I rated yesterday a six on the AFI (Actual Feeling Index) scale. It’s surprising, even to me, that the fatigue effects seem to be dissipating so quickly. I’m hoping it is a trend that continues. Feeling somewhat better also allowed me to cut back slightly on one of my pain medicines. No more to report for yesterday. Take care everyone.