Tuesday, December 25, 2007

Holiday Update

It’s been two week since I began my new chemo regimen. The past two days have been good, almost back to how I was feeling prior to this newest chemo cycle. I started working out again yesterday after a week off, always a good sign. I have one week until my next chemo round. I had one minor health success this week. A white coating that has been on my tongue for about a year is 95% gone. I can’t tell you the amount of time and energy trying to get rid of this stuff… brushing, scraping, multiple medicines, many different rinses, and visits to more than one oncology clinic. Nothing worked; it was frustrating! I was told that it was harmless bacteria, but nonetheless, it bothered me. I suspected it was a combination of my nutrition drink and a lack of saliva. My salivary glands are almost completely shot due to the radiation treatments and surgeries. About 5 days ago I began using an over-the-counter mouth moisturizing spray. The white coating on my tongue is practically gone. Poof, like magic. I’ll have to ask my doctor about this next week to make sure it is safe to use, but for now I’ll celebrate the small victory.

The holidays for me have been filled with friends, family, and a lot of good wishes this season. I wish you all my best and a HEALTHY and happy new year.

Wednesday, December 19, 2007

Chemo Update

Hi. I’ve received a lot of e-mails and a few terrific comments posted on my blog from my December 13th posting. Thank you to everyone that has checked in, provided insight into some of their own experiences, or is just thinking of me and wishing me well.

Here’s the chemo update. Avastin, a newer chemo drug, was administered 8 days ago on December 11th. I also began taking the daily Tarceva pill, another chemo drug, that same day. This stuff has kicked my butt. Side effects in order of discomfort so far have been: a severe debilitating headache lasting about 36 hours (almost gone now), toe/foot numbness (seems to be diminishing), fatigue (it kicked in about the time of the headache), severe skin rash on my face, loss of appetite, and then a few more minor ailments. As I write this, I’m feeling tired, but okay. I spoke with my doctor’s Physician Assistant earlier in this week. She and my doctor are hoping that these are initial reactions to the new drugs and that they will diminish. Guess what? I hope they’re right! Time will tell. As I’ve said before, on paper, this looks like a promising path to a cure, but I have to be able to tolerate this drug regimen. The targeted delivery duration of this drug cocktail is 6 – 12 months. My next Avastin dose is scheduled for January 2nd, once every three weeks.

That’s it for today. Take care everyone.

Wednesday, December 12, 2007

December 13 2007

Published at 12:01 AM CST on 12/13/07.

Hi. I’ve been waiting to write about this day for the past 2 – 3 months. It has special significance to me. One year ago today I had a follow up visit with my surgeon to review the results of my latest CT scan w/contrast. The scan showed five cancer hot spots; they were all in areas which my surgeon felt were inoperable. I thought to myself, “how the hell did I get here?” Five months and one day earlier on 7/12/06 I had gone though an incredibly difficult surgery. To review the bidding, the surgery took twelve hours, removed body parts, took body parts from two places and put them in other places, put me in the ICU for 2 days where I was sure I was going to die, then another 7 days in the hospital. I had a tracheotomy for about 4 weeks (that was torture) not to mention a number of other tubes. My family and friends were incredible during my slow recuperation. Fast forward to 12/13/06, I showed no evidence of disease for five months and 1 day following that surgery. Now, here I was again! I was back in my surgeon’s office with five friggin cancerous hot spots. I asked him the question that many, although not all, cancer patients ask their doctors. What’s my prognosis? If you think about it, it’s not really the question that’s tough, it’s the answer. He said I should be thinking in months, not years. I guess that’s an easier way than saying soon. He said he had an obligation to mention the potential use of the palliatative care unit at my cancer center. I’ve written about this before, but to revisit it, that’s the unit that tries to make you as comfortable as possible until death. Cure is not their goal. My surgeon also suggested a visit with my chemo doctor. At this point in my life on 12/13/06, I had just begun getting my life back together. My speech was coming back strongly, my strength was back due to an aggressive workout program, my golf game was beginning to improve, and I was considering going back to work in early January. I deluded myself into thinking that I was actually going to escape and leave Cancer World behind. Good bye and good riddance. I had been told once before that I had a few months to live. That was in June 2006 when my surgeon said that without the surgery, I would die before yearend. By our conversation, I could tell that he believed it would be significantly before yearend 2006. With the surgery, there was a 15% chance of a cure. I left my surgeon office on 12/13/06. Given the odds, I was disappointed, but not surprised. I then met with my chemo doctor that same day. It seemed like a better choice than the palliative care unit. On 12/20/06, I began my third cycle of chemo. Chemo continued for almost 9 months until 9/12/07. One might think that I have to look these dates up, but I don’t, they are etched firmly in my mind. The chemo was brutal during about 50% of this time. Fatigue was the primary culprit. Limb numbness was also high on the list of why one tries to stay healthy and avoid chemo. I had six different cycles of chemo during this timeframe (dozens of rounds) and they were successful for the most part. In June and in October 2007 I had two more surgeries to remove new cancer growths (they were not part of the original 5 hot spots that were on the scan on 12/06). The surgeries weren’t trivial, but certainly not on the scale of the one on July 12 2006. It’s been a rough 12 months. I’ve tried putting my energy into being a good father, being more generous, and keeping myself healthy. Some of these goals have been more successful for me than others. I’m glad I’m still here a year later. I’m happy for the family, friends, doctors, care givers, and researchers that have stuck by me. THANK YOU again and again and again, I couldn’t do it without all of you. I’m hoping this new chemo regimen that I began yesterday will result in a cure. On paper it shows promise for my specific disease. Hope is key to cancer patients that haven’t given up. I hope this coming year is a bit easier than the past 12 months and I hope I’m here and feeling well on December 13 2008 so that I can write this story all over again one more time.

Take care everyone.

Tuesday, December 11, 2007

Chemo Cycle 9 – Round 1

Here’s a quick up. It was a long day today, but not nearly as long as some in the past. I met with my chemo doctor… on time! Actually, due to incredibly heavy traffic I was 15 minutes late and he was waiting for me. He typically doesn’t see Head & Neck patients on Tuesdays, but he made an exception for me today which I appreciate. We then connected with a friend on the research staff for a short holiday reunion before heading off to the chemo unit. Chemo began about an hour late, but only lasted 2 hours. Compared to some sessions which have lasted 12 hours, this felt like a day at the beach. The drug being used is Avastin and it will be delivered once every three weeks. There is a 2% incidence of serious side effects… heart attack, stroke, and death. Waning signs, if any, leading up to these side effects include fever and high blood pressure. So, I’ll have to be on the lookout for these conditions. 2% isn’t a large number; however it would suck to be in that 2%. I also began taking a daily pill, 150 mg Tarceva. My doctor plans to leave me on this treatment regimen for 6 to 12 months or for as long as I can tolerate it. It’s somewhat viewed as a maintenance program. I won’t know how the drug will affect me stamina-wise for awhile. It’s one of my concerns and time will tell. I can continue to workout as long as I feel up to it, but not with the intensity of the past month. That part I will miss.

I’ll keep you posted. Take care everyone.

Monday, December 10, 2007

Chemo Restarts Tomorrow

I spoke with my doctor today. We will begin a chemo cocktail of Avastin and Tarceva beginning tomorrow (12/11/07). This will be chemo cycle #9. Avastin is delivered via an IV and Tarceva will be a daily pill. The Avastin will be scheduled every three weeks. The duration is to be determined based on my tolerance and my doctor's ongoing assessment. It’s typically delivered for 6 rounds. I have a lot of mixed feelings about this. On one hand, I have no evidence of active disease. On the other hand, both my doctor (most important) and I believe based on all of my recurrences (4 in the past 2 years), it is only a matter of time before my disease resurfaces in the form of a new detectable hot spot / tumor. I’d love to wait as I’m feeling pretty good right now, but I don’t want to risk having more body parts, like more of my tongue, surgically removed. The old saying, between a rock and a hard place, sums it up nicely. I suspect it will be a long day tomorrow between meeting with my doctor, getting blood work done, and then having the chemo scheduled and delivered.

One can look Avastin up on Google. The side effects are pretty scary; but, so is my cancer. Potential side effects include stoke, heart attack, death, difficulty breathing, weakness, and the list goes on. Once again, between a rock and a hard place, seems fitting.

Wish me luck. I’ll keep you posted. Take care everyone.

Tuesday, December 4, 2007

A General Update

There’s not a whole lot to report out on since getting the balls rolling with my next steps a few days ago. Another of my potential treatment option paths, a phase II Head and Neck drug trial at the Dana Farber Cancer Institute in Boston is now off the table due to prior use of Docetaxel a year ago. I am continuing to explore the use of another trial drug following a few different avenues and also keeping in mind the Avastin / Tarceva path option discussed with my doctor on Thanksgiving Day almost two weeks ago. I hope to have a clear direction by the end of this week or at the latest, early next week.

My workouts are coming along quite well. I’ve increased my aerobic intensity 40% (based on calories burned) in a 30 minute period and am now using 5 to 20 pound dumbbells in place of the 5 pound dumbbells I began with on 11/10/07. I’ve averaged 5 workouts per week during this 4 week period, but plan to drop down to 4 per week to give my body a chance to build itself up between exercise days. Muscles build themselves up by repairing themselves after a workout and they need a day break between workouts to do this repair. I’m not sure this is factual, but as you get older, one has a tendency to state as fact what someone somewhere once told them. I think that Andy Rooney of 60 Minutes would agree with me on this one.

I feel more like I’m moving from Cancer World back to the world I once knew. I’m not there yet, but I’m headed in the right direction. My eating and talking will never be back to “normal,” but I’ll get past that within the next few months if I can keep the disease from returning. Traveling is still pretty much out of the question due to the resulting stress and hardship caused by these two disabilities.

For those of you that follow Leroy Siever’s NPR cancer blog (and even for those of you that don’t), he has had three blog entries in the last four entries that have resonated with me this past week. The NPR website URL is at…

http://www.npr.org/blogs/mycancer/

The blog entries are:
12/04/07 – Enjoying the Lights this Year
12/03/07 – Getting Your Hopes Up
11/29/07 – Suspended in Time

They were all so well written and so close to my own feelings at one time or another in the recent past. So, if you’re interested in better understanding the perspective of a longer term cancer patient and to a large degree, me, I encourage you to read his blog. I posted a comment on his blog on 12/03/07; this is something I do about once per month. When he is feeling well enough, he reads the comments which can range from a low of 50 to up to 200 per day. He has really touched a nerve in this cancer world which was largely unknown to many of us, me included, until recently. That's not to say one hasn't been touched by cancer, but there is a difference between being touched by cancer and truly understanding the impact.

Take care everyone and thanks once again for staying in touch.

Friday, November 30, 2007

A Reinterpretation of Recent Events

It’s been an intense past 10 days for me in Cancer World. With new clarity, I need to retract part of my last blog entry. I believed what I wrote when I wrote it, but after talking to a few people close to me and my situation, I have a new take on what my doctor was telling me in my visit with him the Wednesday before Thanksgiving. I think he was telling me to enjoy this time right now, there would be more disease and chemo later, and when that time came, he would be there to help me through it. Bottom line, I wanted to be more aggressive in fighting off a recurrence and he wanted me to enjoy the holiday. So, we’re now back together on the same page.

I have been exploring a few new avenues and it is still a rocky ride. One avenue was a Head & Neck cancer vaccine trial at the University of Pittsburgh Cancer Institute. The vaccine used part of one’s own blood cells to boost their own immune system. It is in early trials, 10 people over the past year. So far, it is showing success. Unfortunately, after having my blood tested for a specific blood type, HLA A2, I was negative for this blood type and therefore ineligible for this trial. Nothing ventured, nothing gained.

I am exploring the use of another trial drug following a few different avenues and also keeping in mind the Avastin / Tarceva path option discussed last week with my doctor. My friends and family have been very generous in helping me explore some of these options via their contacts and knowledge. You know who you are and thank you so much for all that you have done.

I’m continuing to exercise and build up my stamina. That usually feels really good. I’ve also been able to back off of some of the pain and anxiety medicines. Ideally, I could get rid of them all together. I went on a liquid diet about 2 weeks ago and that seems to be helping with letting my tongue heal. But, I’m looking forward to real food again in the near future.

Have a terrific weekend. Take care everyone.

Monday, November 26, 2007

The Roller Coaster Ride Continues

First off, I hope everyone had a wonderful Thanksgiving with family and friends. We had a lot of wonderful visitors.

I haven’t written in a week due partially to the holiday, but mostly because I’m digesting the most recent discussion with my primary oncologist. We met with him last Wednesday. My interpretation of his message was that 1) he felt that I still had cancer, 2) I was out of options, and 3) he believed the best life for me would be to not continue any more treatment. Basically, go home, give up hope for a cure, and let nature take its course. He called us at home on Thanksgiving morning (about 12 hours after we met with him) and said he rethought our discussion and would like to explore one more chemo option, a drug cocktail of Avastin and Tarceva to be delivered sometime in December. So, I’m mulling this around at the same time I’m exploring a drug currently undergoing clinical trials for Head and Neck and other cancers. Although this drug shows a lot of hope, I don’t qualify for any of the 27 trials currently in progress across 20 countries due to prior treatments. I’m also beginning to explore obtaining this drug through a “compassionate use” program that some drug companies offer. Needless to say, this is confusing and depressing. As I figure this out, I’ll provide a new blog entry.

Nobody ever said that cancer was easy; this past week was a real reminder of how tough it can be. Take care everyone.

P.S. To justme519 (Tanya). Thank you for keeping up with my progress and your best wishes.

Saturday, November 17, 2007

Randy Pausch update

He is the Carnegie-Mellon University (CMU) professor that I wrote about in this blog on September 20 2007 who delivered his “last lecture.” I like to follow certain stories and topics and Randy Pausch is one of them. He was being treated with two palliative chemo drugs, Gemcitabine and Tarceva. These are two of the same chemo drugs I have been on this year, but in my case the hope was for a cure, not palliatative. Randy has pancreatic cancer and was given a few months to live a few months ago. The palliative chemotherapy that he had taken for six weeks to try slowing the spread of his cancer appears to be doing more. The tumors in his spleen are gone, and the dozen tumors in his liver are either stable or shrinking. His doctor said that 85% of patients in Randy’s situation show NO response with these drugs. Randy looks to be in the fortunate 15% who are showing a response and his response seems remarkable. As other cancer survivors, physicians, and caretakers have reminded me over the past two years, each of us is really a statistic of one or zero, we either make it or we don’t. With Randy gaining several extra months of healthy life, he is now eligible for other, more experimental, treatments. His doctors at the University of Pittsburgh Cancer Institute (UPCI) are looking into other chemotherapy drugs and a custom vaccine made from his own cancer cells. Randy continues to have a positive outlook, but not in a Pollyannaish way. As Randy’s story continues, I’ll be sure to provide an update. He is now a beacon of hope for other cancer patients. And, to emphasize one more important point, a custom cancer vaccine from one’s own tumor cells, how cool is that? Yet another recent development in the fight of this killer disease.

Thursday, November 15, 2007

Exercising

My preparation in getting ready for my next chemo treatment is coming along. I have done a light workout each day for the past six days and plan to continue working out daily as long into my next chemo cycle as possible. My workouts consist of light aerobics for 30 minutes and then 45 minutes using 5 and 10 pound weights with a bit of head, neck, and back stretching thrown in. It’s still a long way from the 35 pound weights I used to use. However, it feels great to be active again.

Chemo begins in 10 days on November 26 2007. I won’t know the chemo regimen until my clinic visit on November 21 2007. My doctor is still exploring the best possible treatment. It seems like there are so many new options currently hitting the market. Plus, we want to see the results from the new CT scan which will take place on November 20 2007. The pain in my tongue continues to be a serious concern. The pain seems to have subsided a bit, but it is still impacting my ability to eat and talk. I have been able to back off on some of the extra pain medicines and am almost back to pre-surgery pain medicine levels.

The weather here is phenomenal, high 60s and clear skies. It’s really a joy.

I’m not sure how many of you are following Leroy Siever’s cancer journey on the NPR blog website. He is really struggling. He had major back surgery about 6 weeks ago to replace one or more vertebra in which cancer had taken over and a serious infection set in… not to mention a stroke during or immediately following surgery. Now he has a pump attached to his body releasing antibiotics directly into the surgical site in his back every few hours. I liked his blog entry today (11/15/07) which can be seen at URL: http://www.npr.org/blogs/mycancer/. He has almost forgotten about his lung cancer (which is very serious to his longevity) and has replaced that focus with what could be an even deadlier foe. He makes a point that cancer has become a way of life for him with its ebbs and flows. He also realizes that once he recovers from the infection, the cancer will still be waiting for him. In many ways, I feel the same way. It is something that one learns to live with and more than likely, even at times when there is no evidence of disease, it will always be waiting. Cancer is almost like the perfect storm, a foe who is patiently aggressive to the detriment of the victim.

Take care everyone.

Tuesday, November 13, 2007

The Complete Idiots Guide to Cancer

I did a web search to see if anyone had written a book called, “The Complete Idiots Guide to Cancer.” I didn’t find one. The closest match I found was a book titled, “The Complete Idiots Guide to Living with Breast Cancer.” One of the purposes of this blog is the educate people about cancer. I’ll scratch the surface on two topics today: Cancer cells and chemo-brain.

Cancer Cells. This is pretty basic stuff, but I found it interesting. A tumor is a build up of cells. There are two types of tumors: benign and malignant. A benign tumor is an abnormal growth of normal cells. This can cause health problems, but can usually be addressed via surgery to remove the tumor mass. A malignant tumor is an abnormal growth of abnormal cells. These will cause health problems and can be addressed using surgery, radiation, and chemotherapy. As I’ve mentioned before, cancer patients refer to this as the slash, burn, and poison treatment methods. Cells within the human body replicate on different time tables. Cells which line the stomach wall may divide every 24 hours to replace the cells which have been destroyed during the process of digestion. There are other cells, such as those in one’s nerves, which never (or rarely) divide. There are two main phases to cell growth, the Interphase and the Mitotic phase. For a normal cell to replicate, it must meet 3 criteria: sufficient growth, the need for a new cell, and undamaged DNA. To move from the Interphase to the Mitotic phase, it must meet two more criteria: successful DNA replication and sufficient growth. In cancer cells, these checkpoints do not exist and cancerous cells can divide to their hearts content eventually forming detectable cancer tumors. Once cancer cells enter the blood stream or other paths of least resistance (e.g., the nerve structure), they can move throughout the body. If they find a stronghold somewhere away from the original tumor site, this is called metastasis. Cancer patients refer to these as Mets. In my case, I had extensive perineural invasion of cells within the nerve in my tongue. This was the finding following my surgery in July 2006. As a result, the cancer in my body has traveled from the original tumor site to other areas, but not too far from the original site. It has all stayed in my head and neck area. The normal progression of cancer for people with Head and Neck disease has been cancer metastasizing into the lungs. So far, I’ve been lucky in this respect.

Chemo-Brain. This is a lesser-known side effect of chemotherapy and it causes cognitive dysfunction. It is only recently getting more attention. As there are increasing numbers of long-term cancer survivors who are trying to get back to a normal routine, that's where one begins to notice things like the cognitive side effects of chemotherapy. The shifts can be subtle. It may result in a lack of an ability to concentrate, multi-task, or remember things as well as one used to. The more one’s work or personal life demands these functions, the more one may notice the subtle side effects. Subtle or not, chemo-brain can be frustrating to patients, who may suddenly find themselves unable to accomplish tasks they formerly completed with ease. And it's a mystery to doctors, who are still trying to understand what causes it and who is likely to suffer. The good news is that there are new studies taking place to yield insights into better identifying and tackling this side effect. I know that I feel some of these side effects. They are subtle though. I compensate for it by making greater use of to do lists.

I hope this was informative and at least a little bit interesting today. Take care everyone.

Saturday, November 10, 2007

Getting Ready for my Next Chemo Cycle

A female friend of ours FINISHED the New York Marathon last Sunday. Congratulations CB on the training and the accomplishment! There was a great picture of her on the Internet with Katie Holmes (Tom Cruise’s wife) running just behind her about two thirds of the way through the race.

My next chemo cycle begins in 2 weeks and 2 days, not that I’m counting. I will begin my training today for this other type of marathon. I just recently learned the following about cancer treatment, fitness and survival. I guess I knew it before as it is intuitive, but had never seen any studies on it until yesterday.

A little background it is order. The physical fitness of patients is rated by their doctors. A number of “performance scales” can be used in this measurement process. One popular rating scale is the ECOG / WHO / Zubrod score. It rates patients on a 0 to 5 scale as follows:
0 - Asymptomatic (showing no evidence of disease)
1 - Symptomatic, but completely ambulant
2 - Symptomatic, <50% in bed
3 - Symptomatic, >50% in bed, but not bedbound
4 - Bedbound
5 – Death

Most people try to avoid being a 5. A little gallows humor. I would rate myself currently at a 2 level. During heavy periods of chemo or following more significant surgeries, I have been in the 4 category. I have also been in the 3 category, bordering on a 4, for more than a month at a time during the latter stages of some of my chemo treatments. Aggressive chemo can be very debilitating.

More background - I received the newsletter from my cancer center yesterday. In it was an article titled, “Fatigue as a predictor: advanced lung cancer.” As you know, I don’t have lung cancer, but Head & Neck cancer is so far down on the list of types of cancer (and therefore receives relatively little funding) that much of what my doctors model their treatment plans on are the success of lung cancer studies. They feel there is a high enough correlation between lung cancer and Head & Neck cancer that there is validity in this approach. Based on the newsletter article I did a little web surfing and found other articles backing up the one in my cancer newsletter.

Okay, it’s taken me a while to get to the point in this blog entry, but here it is… there is a high correlation between one’s fitness going into chemo and their prognosis. In one study of treatment-related death (TRD – it seems like there is an acronym for everything), 2.3% of the patients died from chemo toxicity. It’s not a big number, but is would suck to be in that 2.3% group. TRD for patients with a Performance Score of 4 were 36 times (yes, 36) more likely to die from chemo toxicity than patients with a performance score of 0. Patients with a performance score of 2 were almost twice as likely to die from chemo toxicity than a patient with a performance score of 1. Going back to the article in my cancer newsletter, the conclusions made there was more qualitative. But their bottom line was that those with a better PR scores could tolerate their chemo treatments longer and were therefore more likely to complete them. That in turn led to a better prognosis.

Many of you probably remember from a few months ago when I threw in the towel and couldn’t complete my last round of chemo cycle 8. I was too fatigued and honestly felt like the chemo would kill me before my disease. As such, I still don’t regret not moving forward with that last round. I have reached the conclusion though that if something is going to save me, it is going to be a systemic solution (like chemo) versus a point solution (like surgery). That’s not to say that surgery doesn’t have a place in my future treatment options, but I’m convinced surgery is not going to cure me whereas I still have the hope for a cure with some systemic type treatment.

I will workout today and will try to do some type of workout everyday going forward to move from a 2 to a 1 on the performance rating scale in preparation for my next chemo.

Have a good weekend and take care everyone.

Thursday, November 8, 2007

I have a plan

I guess for those that know me, having a plan is not a surprise. For me though, planning borders on having an OCD. It’s probably what made me relatively good at what I did before cancer. I liked having a plan. Not having a plan made me uncomfortable. Today’s blog entry segue is that I moved my chemo doctor’s appointment up to yesterday from next week. Two forces drove this change. First, I have some new pains and small inflammations in my tongue and necks area which may not be surgery (which was 3 weeks ago today) related (i.e., they could be disease recurrences) and as such are causing me a fair amount of anxiety. And second, I didn’t have a treatment plan. That was driving me absolutely nuts.

I e-mailed my chemo doctor at 4 A.M. yesterday morning asking if I could move my appointment up and the why behind this request. A minute later he e-mailed me back and said to come in at noon. One will never be able to say these dedicated people don’t work hard long hours. I waited about 3 hours yesterday, but that’s a story for another day. I spent about 45 minutes of high quality time with my doctor’s Physicians Assistant (PA). PA’s were not a profession with which I was familiar before entering Cancer World. These are highly trained and educated professionals that work as a team with their doctor. They do exams, answer questions, provide insight, suggest options, etc. At times it is hard to tell the PA from the doctor. I then met with my chemo doctor. We discussed chemo drug options in some depth and put a solid plan on the table. Here it is:
1) CT scan for a new baseline – 11/20 (Tuesday)
2) Clinic appointment – 11/21 (Wednesday)
3) Chemo begins – 11/26 (Monday)

We haven’t come up with the exact chemo drugs just yet. My doctor wants to give it a little more thought and also talk to some of his colleagues. I’m in good hands so I’m okay with that. Until we get the scan results and decide on the drugs, we won’t know the frequency or duration of how long the chemo will be administered. I don’t have the times yet for these appointments, that will drive me a bit crazy until they show up on my schedule, but I can live with that for now. We have visitors coming for Thanksgiving. Fortunately, the chemo will not begin until the Monday after the holiday.

That is all for today. Stay well.

Tuesday, November 6, 2007

Current Picture

Many of you that read this blog know me. Some I see frequently, some I have not seen before my cancer diagnosis 3 years ago. The above is a picture taken about 2 weeks ago. It is a friend, my sister, and me. Yes, that’s me on the right. I’ve lost 60+ pounds since this started. Not exactly the diet method I had in mind, nor one I would ever recommend. I thought that some of you might be curious what I look like after 7 surgeries, 35 radiation treatment, and 8 chemo cycles. They really do amazing work with facial reconstruction. I do have numerous scars on my neck, but they are not really visible in this picture.

I found a new Internet resource for cancer victims, survivors, and care givers. It is called the Cancer Survivor Network (http://www.acscsn.org/). It includes brief stories and personal web pages by 1000s of people touched by this disease. It is searchable by cancer type, gender, etc. For me, it’s helpful to see stories from people with similar disabilities, treatments, and decision requirements. The caregiver stories are also compelling. I hope you never have a need to go to this website, but if you do, either for yourself or a loved one, know it is there. You have to register to gain full access, but registration is free and only takes a few minutes.

Take care and stay healthy.

Sunday, November 4, 2007

Science Fiction… Coming to a cancer hospital near you?

The thing that is intriguing about science fiction is that eventually, some of the fiction turns to fact. Remember the James Bond car tracking device in Goldfinger or the Star Trek breast communicator? These were fiction at one time, now they are almost commonplace with GPS positioning devices and Bluetooth cell phone ear buds. I have been reading about a new approach to destroying cancer cells this weekend. It reads almost like science fiction.

The technique uses carbon nanotubes and ultrasound to destroy cancer cells and tumors. See Wikipedia for an explanation of a nanotube. To give you the feel for the size of a nanotube however, the thickness of the walls of a nanotube can be 1/50,000 the width of a human hair. That means that the walls of 50,000 nanotubes piled one on top of the other can be as thin as a human hair. The length of a nanotube can be up to 10,000 times longer than the width. So, even there, you would need 5 of the longest nanotubes stacked end-to-end to approximate the width of a human hair. Nanotubes can be filled with chemo therapeutic medicines. The next trick which really seems like the sticky point to me at this juncture, is how does one deliver the nanotubes to the cancer cells and tumors. The holy grail in cancer research currently addresses this question. It is seeking a way to do just that. Cancer cells have different receptors than normal cells. Plus, different cancers have different receptors in their cells. The newer chemo agents, many of which are in phase I, II, and III FDA trials are genetically engineered to seek out and attach themselves to these different, yet specific receptors. The next step, once the nanotubes are attached to the cells, how does one release the chemo or otherwise use the nanotubes to destroy the cancer. This is where the ultrasound comes in. In studies on lab animals, an ultrasound beam, believed to be otherwise harmless, has been directed over the body for two minutes, the effect of which has been to release the chemo agents or to heat up the nanotubes to destroy the cancer cells or tumors. The success in rabbits with aggressive cancers has met with 100% tumor eradication. One article written a year ago stated that human trials were expected to be about a year away. There are articles which site potential for early cancer detection, cancer cell and tumor eradication in humans, and far less collateral damage than from the current treatment methods.

I talked to a very well respected cancer researcher about this technique about 2 – 3 months ago. She has been exposed to this research and was very excited about it. However (yes, there’s the “but” in cancer treatment), she felt that for this to become a standard of care could be 10 – 20 years away. I respect this researcher greatly. My challenge to the cancer community is to move as quickly as possible. One doesn’t get to say this too often about one’s work, but in this case “LIVES ARE LITTERALLY AT STAKE.”

For more information on the topic, I’d suggest Goggling the terms nanotube, ultrasound, and cancer. You’ll get some great hits within the first two pages.

Take care everyone.

Tuesday, October 30, 2007

A Brighter Mood

It’s Tuesday afternoon and I’m recovering from the surgery. I’ve been sleeping better, resting more, staying on a liquid diet (but still getting the needed calories and nutrients), and did a light workout (5 pound weights and stationary bike riding) today. I’ve always liked working out and its one more activity that makes me feel “normal.” This is very typical in the Cancer World community, the drive to feel normal. I record my workouts. My most recent prior workout was almost 6 weeks ago on 9/21; the one before that was almost 3 months ago on 8/7. Between the chemo and the surgeries, I have not been feeling strong enough to work out. When I’m feeling well, I work out 3 - 4 times per week. Before cancer, I used dumbbells weighing up to 35 pounds, so 5 pounds is a bit wimpy, but I’ll take it for now. Before long, I’ll be up to the 10 pound weights.

I read someone’s cancer blog the other day. It was very well done. It had beautiful pictures and a wonderful story of long term success in keeping the cancer at bay. It was written by a women who was probably in her mid-twenties, but had been fighting cancer for over 10 years. The author began or ended each blog entry with what she enjoyed most that day, that is, what made each day special. I began thinking about this and I liked what she had done. I’m not going to copy it, but I am going to try to spend some time each day thinking about what made the day special or good for me and be thankful for that time and activity. There may be a lesson here for others are well.

I have 13 days until my next cancer appointment. That’s a long time in my world without having to see a doctor. It may not be the best thing that has happened to me today, but it’s near the top of the list. I suspect I’ll begin pre-emptive chemo in mid-November again as well. Not a happy thought.

Enough for today. Take care and stay well everyone.

Sunday, October 28, 2007

More… Post Surgery Update

It’s Sunday afternoon and I’m still recovering from the prior week’s surgery. The surgery seems to have been successful, as previously reported. But, the pain in my tongue has not subsided which has resulted in further difficulty in eating and talking and has added to the amount of pain medicine required to be comfortable. The pain medicine makes me a bit drowsy as well. I may shift to a complete liquid diet for a few days to give my tongue a chance to heal and thereby allow me to reduce my pain medicine. I had some wonderful visits by family and a friend this week. Thank you. Also, some correspondence from a few people I haven’t heard from in a while. That always makes me feel good.

I’ve spent a little more time talking to various doctors about early cancer detection. It appears that early detection of lung cancer is a magic bullet in the battle of this disease. The issues here are a bit complicated. First, the cost of a chest CT is about $200 – 300 (you have to shop around a bit for this price) and more than likely will not be covered by insurance. Second, there is a natural avoidance by seemingly (and probably) healthy people to go through the expense and inconvenience of this test. Although it is non invasive, painless and only takes about 15 minutes to perform, the scheduling hassle is still there. Also, the “it can’t happen to me” syndrome is pretty strong. And, third the potential for a false positive would lead to more costly tests or even invasive procedures that could lead to health complications. So, for the time being, this magic bullet may not be gold or silver, but it must be at least in the bronze range. If you are a smoker or a drinker, are around smokers, or you used to smoke heavily, I encourage you to consider this test. You can lead a horse to water, but you can’t make him drink. By this, I mean the action is now in your hands. By the way, I got my chest CT results back on Friday and it was negative for disease. This is what I was expecting, but it is always nice to have it confirmed.

I read a very sad blog entry today. It chronicled the final hours of a cancer victim by his spouse on Friday. If interested, it is at http://daveberg.redtoenail.org/. I am a bit obsessed with cancer stories: good, bad, and sad. If you’re not up for reading a sobering account on this subject, I’d suggest skipping the above story.

Take care. I hope you all had a good weekend.

Wednesday, October 24, 2007

Post Surgery Update

It’s Wednesday and 4.5 days since surgery ended. It was a tough few days, but as of yesterday, the pain medicine seems to be working… FINALLY. It really didn’t seem to put a dent in my pain until then. I’m now able to sleep better, wash, walk around, read, and concentrate again. That all feels good. When in pain, all those normal activities fall away and I’m relegated to Law & Order re-runs.

I was able to locate a new website which specializes in cancer blogs. As I’ve said in the past, I read a lot about cancer everyday looking for solutions and ways to deal with my own situation. The blog is called RedToeNail.org. This is an online community designed to help people whose lives have been touched by cancer. Whether you are the one with cancer or it’s a friend or family member who you are caring for, RedToeNail.org offers a supportive online environment where you can share your experiences via an online journal (blog), learn from others and find support for the challenges you are facing. I’m still exploring its resources, but am finding it helpful. If interested and useful to you, their website address is…

http://www.redtoenail.org/

I have a few out of town visitors coming in today and tomorrow. Since I’m feeling part way human again, I’m very excited about their arrival. I’m sure I’ll be on the slow side for them, but we’ll have a good reunion nonetheless.

Take care and stay health.

Saturday, October 20, 2007

2:25 PM on Thursday

That’s the last thing I remember on Thursday afternoon. This is my 7th surgery in three years. I make it a habit to know what time it is when I go under. I burnt a CD for my doctor to play while performing my operation. We were on the second cut, “Bad Day,” by Daniel Powter. The first cut was “Hey there Delilah” by the Plain White T’s. The next thing I knew, it was 5:40 PM and I was in the recovery room. My doctor enjoyed the music selection. There were about 5 people in the operating room when I went under.

The surgery was a success. My doctor removed the two small tumors (each about the size of a dime), got clean margins, and didn’t impact my facial nerves. I was in substantial pain in the recovery room, mostly my throat and tongue areas, not the surgical site. They said it was probably from the tube they put down my throat. They gave me two shots of Diladid to ease the pain. The nurse said it is 10 times more powerful than morphine. She also said I shouldn’t have any more because it could keep me from breathing. This worried me in my fuzzy, post surgical mind. She probably shouldn’t have said that. We spent the night in the hospital. Always a pleasure. They wake you every 30 minutes during the night to see how you’re doing. It is definitely not a place for a good night’s sleep. I got a chest CT at about 1:00 PM on Friday and was released at 2:00 PM. It is now Saturday afternoon and I’m still quite sore. This includes my throat, tongue, and surgical site areas. I’m taking some additional pain medicine to help me through this period. So, my new worries are the results of my chest CT, which will probably come back negative, and my throat/tongue pain. I’m not so sure about these areas being clean longer term. I will see my surgeon in about a month for a post surgical follow-up. All my stitches are either stiri-strips which will fall off within two weeks or are dissolvable. The incision is in front of my left ear and about 5 – 6 inches long. I can’t see it because of the stiri-strips.

Now onto the longer term plan. In 3 – 4 weeks, I’ll see my chemo doctor and begin more chemo. He’s going to review what I’ve had to date to see if he wants to try any of the same drugs again. I don’t view my prior chemo as a failure; it just wasn’t the overwhelming success we had all hoped for. He has a new drug in mind, one already in use for this type of cancer, and we’ve been researching it via the web. If we can find the right drug, it will kill this beast. That’s the “hope” part of all this.

That’s enough for now. Take care and stay well.

Wednesday, October 17, 2007

Surgery on Thursday

By the time you read this, I’ll most likely be heading into or having surgery. I check in for a pre-op visit with the anesthesiologist no later than 11:00 AM on Thursday. After getting checked out, my surgery will be sometime in the afternoon, probably later than earlier. I will be fully under, unlike my recent biopsy experience. They will make an incision in front of my ear, probably about 4 - 5 inches. That will give them the room they need to work. It’s a little more complicated than I was hoping. They have to move my facial nerve out of the way so as not to cut it. That could cause some facial paralysis. But, the paralysis, if it happens, should not be permanent. No guarantees on this however. I’ll spend one night in the hospital and then head home on Friday if things go according to plan.

To back up a little, I met with my chemo and surgery doctors today. We all (the three of us) agreed that 1) surgery is needed 2) further chemo is needed, and 3) the chance of a recurrence even after the surgery is very high given my history. My chemo doctor’s preference was to do the chemo first, then the surgery. His rationale was to see if the drug he is planning to use is effective on my detectable tumor. And, the sooner the better because of the undetectable cancer cells which we all believe to be there. He wasn’t violently opposed to doing the surgery first however. I choose to do the surgery now versus later because: 1) the tumor is getting bigger and this could lead to a even more complicated surgery, 2) it is beginning to press on my facial nerve which is uncomfortable, 3) I want this thing out of me, and 4) maybe most importantly, I’m not strong enough for another round of chemo right now. On a 1 to 10 scale, I’m still at a 5 level for stamina and strength. I need more time to recover from the prior 9 months of chemo. I was hoping for early next week on the surgery, but my surgeon said he was out all next week and we could do it when he got back. I didn’t like the idea of doing nothing for 12 – 13 days, so the other option, which I took, is tomorrow (Thursday). Both doctors examined me and didn’t see any further signs of tumors. They do want me to have a chest CT to rule out a spread of the disease to my lungs or elsewhere. I’ll probably have that within the next day or two. Why that couldn’t have been done when I had my Head & Neck CT about 2 weeks ago, I’m not sure. I guess that would have made it too easy on me.

I’m getting really tired of writing about cancer and reading about it and researching it on the Internet every day. It has become my life, it does define me. I would much rather be researching my next vacation to some far off exotic location. But, that’s not going to happen right now or within the next few months.

I am beginning a list of people who you would rather not be on a first name basis, unless, of course, they also happen to be your friend. Here’s the beginning…
- Your pharmacist (she knows me and usually welcomes me by name when I refill my prescriptions).
- Your doctors (especially those which end in “ogist.” That would include your oncologist, proctologist, radiologist, and urologist to mention a few).
- The Public Defender (no personal experience)
- The Judge (both civil and criminal, again, no personal experience)
- The local law enforcement or FBI/CIA/NSA agents (no personal experience)
I guess there are others, but these were easy pickings.

Oh well, take care and stay healthy. I’ll update this blog as soon as possible following my surgery.

Sunday, October 14, 2007

Separating the wheat from the chaff

Not much has happened since my last blog entry. My appointments are set at the cancer center for Monday (Phase I group) and Wednesday (Chemo and Surgeon). My fear is that they will not have any next steps, reasonable or otherwise. That fear is shared by my wife. What does one do when one of the best cancer centers in the world runs out of options? That question will be forefront on my mind for the next 3 days.

I’ve more than less decided against a treatment at an outside small cancer clinic in Houston. There is too much negative press on the web about the clinic and its practices. I’m guessing this doctor has helped some people and believes in what he is doing, but he doesn’t have the credentials. Also, he doesn’t follow the FDA rules when he could, he breaks them. One could argue that he does this so that he can treat and cure more patients; one could also argue that he does this for his own personal financial gain. When in desperate times like this, it’s difficult to separate the wheat from the chaff.

I’ll let you all know what happens at my cancer appointments later this week.

Take care everyone.

Wednesday, October 10, 2007

Biopsy Results… Positive

I’ll keep this short. My biopsy result from last Friday was positive for squamous cell carcinoma. This is the Head and Neck cancer I’ve been fighting for 2.5 years. I’m being referred to the phase I group at my cancer center. This is the group that is on the cutting edge with experimental treatments. The standard and customized treatments I have undergone have failed to cure me of this disease. We’re shooting for a set of meetings one week from today on Wednesday October 17th. I’ll meet with the experimental group, my chemo doctor, and my surgeon. Between now and then, there is really nothing more that can be done. I’m sorry to have to share this crummy news with you all, but I’m assuming you’re reading this to stay up with my situation and there you have it. I really have no more information to provide at this time.

Thanks again for your support and stay well.

Tuesday, October 9, 2007

Early Cancer Detection

This blog entry is not about me, it is about cancer in general. I came across a fascinating article in the online version of Wall Street Journal yesterday (10/08/07) on lung cancer. The online address for this article is…

http://blogs.wsj.com/health/2007/10/08/tangled-web-of-conficts-over-lung-cancer-screening/

Here’s the article’s paragraph that caught my attention…

In a study published in the New England Journal of Medicine last year, the Cornell group reported that CT screening of more than 30,000 smokers discovered first-stage lung cancer in 412 of them. Of those, all but eight received some kind of treatment. The overall survival rate for those found to have early stage cancer was 88% after 10 years. The eight patients who declined treatment all died within five years of diagnosis. Currently, the five-year survival rate for lung cancer is just 16%, mainly because the disease is often detected too late for treatment to work. That article concluded by noting “no potential conflict of interest relevant to this article was reported.”

Please stop and think about this for a just a minute. If this study had statistics that gave mortality rates after 10 years, then the study was over ten years old. It is not a recent study. 88% of the people with early detection were still alive after 10 years. That means that 12% of the people died who had been treated. The mortality rate table for people aged 45 – 55 is a little over 4%. I could have picked a younger or higher age group (which had a lower and higher mortality age rate respectively), but I choose one which seemed reasonable for smokers. That means that only 8% (12% - 4%) more of this population died than those published in current mortality tables. This is compared to 100% of the population that died (8 people) within 5 years without treatment. The 8% also compares to 84% of people who die within 5 years from this disease. That, my friend, is a huge difference! It begs more questions. Compared to a CT scan, treating cancer is a very expensive proposition. So, why isn’t this being employed as a way to avoid the cost of treating a deadly disease and eliminating the suffering of cancer patients? I may dig into the cost a bit more and if I do I’ll report the findings in this blog. If early detection in lung cancer is the silver bullet for lung cancer, could it also be the silver bullet for Head and Neck cancer?

A study published in mid-April of this year (2007) showed a 90% success rate in detecting H&N cancer with the analysis of a simple mouth rinse before any physical signs of H&N cancer were present. It also estimated a dramatic increase in survival rates for those detected early with the disease. Those finding were written up in the following article…

http://www.medscape.com/viewarticle/555283

Another H&N cancer article references the negligible progress made in the 5 year survival rate of H&N cancers over the past few decades and further highlights the physical and emotional distress of those with this disease…

http://www.oralcancerfoundation.org/dental/screening.htm

Again, this raises further questions. With 34,000 people in the US diagnosed with H&N cancer annually and 8,000 deaths per year from this disease, how long will it be before this oral rinse analysis becomes part of the annual or bi-annual screening process, much like breast and prostrate screenings are today? This is too late in my case, but I can tell you, an extra few minutes doing a mouth rinse test during my periodic physical exams could have saved 100s of thousands of dollars in treatment cost, 100s of thousands of dollars in lost productivity, and avoided severe pain and suffering that goes beyond myself, but affects all those that are close to me. Yea, it would have been worth it.

In summary, why can’t we look at early detection like we look at the elimination of polio? We rarely treat people with polio today. It is practically non-existent in the US. I know this raises other questions. For example, who pays for this early detection? Are the above articles accurate in their finding? I for one will be following this train of thought and once again, as new conclusions are reached, I’ll be sharing them in this blog.

Your thoughts on this subject are welcomed. Thanks for listening.

Monday, October 8, 2007

My Biggest Fear

I can only think of one or two people with whom I’ve shared this, but it seemed like a good topic for today. My guide for and inspiration in writing this blog is Leroy Sievers. He is the one with the cancer blog on the NPR website and had the “Living with Cancer” special on PBS with Ted Koppel last May. His NPR blog address is…

http://www.npr.org/blogs/mycancer/

I follow his blog daily. I’ve submitted comments to his blog 18 times in the past 4 months. Based on the number of comments he gets daily, I’m guessing his daily readership to be in lower few thousand of people per day. It is a relatively large community. Between Leroy and those that submit comments, the blog provides hope, emotional insight, treatment insight, and a real sense of an entire population that that has walked in his shoes, the perspective from those that care for someone in Leroy’s situation, and writings from people who have lost loved ones to cancer.

I can’t say that I feel close to Leroy personally, I’ve never met him. But I do empathize with him and many of his readers. It’s almost as if Leroy and I were on the same roller coaster with its ups and downs, but currently he is a few train car ahead of me. Sometimes we’re in the same car together; sometimes I’m the one ahead of him.

Last Monday he had a major operation. The cancer had spread to the bone in his spine and a prior surgery to remove that cancer had left him in constant pain. The surgery Monday was to replace one (or more) of his vertebra contaminated with cancer and to alleviate the pain. Ted Koppel, who is a personal friend of Leroy’s, provided a blog update this past Friday. Bottom line, the operation seems to have been “a great success,” but (there’s that but from Cancer World again) during the procedure he suffered a minor stroke. The stroke caused a loss of peripheral vision in his left eye. They call it tunnel vision. “The doctors are not optimist that it [Leroy’s vision] will come back.” This has shaken Leroy pretty bad. It means he will not be able to drive again.

There were 100s of comments on his blog leading up to Leroy’s operation. 98% plus of them were well wishes and prayers. They were all generous and taken in the spirit in which they were delivered. There were a few that resonated with me in a different way; it was the other 1 to 2%. These were comments from people who highlighted the seriousness of the operation. What I don’t think many people fully understand who do not have cancer (or other serious diseases) is the impact of the treatment on our bodies. Our bodies can only take so much. The surgeries, chemotherapies, and radiation all cause a high level of stress, not to mention the actual physical impact, on the body of these treatments. There is a balance that must be taken into consideration and we must rely on our doctors to help us make those decisions where balance comes into play. Since everyone is different and since some medical decisions can not be made until game time (e.g., how much tissue needs to be cut away before clean margins can be found), this is not an exact science. We, the doctors and the patients are in this together. Speaking for myself, I have signed dozens of forms over the past 3 years providing consent and acknowledgement of the risks of my procedures. It’s usually a pretty long list of possible negative effects. The chance of anyone of them actually happening is generally small, but they are there for a reason… TO INFORM THE PATIENT OF THE RISKS.

This has rambled on long enough. So, what’s my biggest fear? If you remember back to the beginning of this blog entry, that was the title. My biggest fear is being permanently incapacitated. I’m a very independent person. I have been since as long as I can remember. Even at 2 or 3 years old, I was independent. Being incapacitated scares me more than death. There is also a fine line between being disabled and being incapacitated. That line can change over time. I think the main difference between the two is that a disability can be overcome, being incapacitated can not be overcome, it is permanent and seriously impacts one’s quality of life.

I hope this provided you with some useful insight and food for thought. As soon as I hear from my doctors on the biopsy results from Friday, I’ll share them with you.

Take care everyone.

Sunday, October 7, 2007

Preliminary Biopsy Results

I went to the cancer center on Thursday and Friday. Thursday was for a pre-operating visit and Friday for was a biopsy of a lump that appeared on the side of my face about 2 weeks ago. They made me comfortable with 5 doses of Versed and Fentanyl in the operating room, but I was fully awake. I talked coherently to the doctor and nurse throughout the procedure. They said most people are asleep by dose 2 or 3. Oh well, no complaints. They used ultrasound to guide the needle biopsy. I watched the whole thing on a 25 inch monitor. This is the same monitor the doctor used to perform the biopsy and guide the needle. This spot is about the size of a dime and has the thickness of about two to three dimes. The preliminary pathologist’s finding is suspicion of cancer. That’s bad news on a few fronts. The good news though is that I switched to GEICO and saved 15% on my car insurance. Kidding aside. I have to wait until next week sometime to get the final biopsy results and talk to my doctors about next steps. The actual good news is that it seems to be pretty superficial. So, I’m thinking it may be easily removed without too much surgery and scaring. The bad news is, this was missed on my CT scan and it was only that my doctor went back to the radiologist and asked about this spot that they even did the biopsy. That means, there may be other spots. Plus, this spot just popped up on my face about 9 days after my last chemo cycle. Other than this, I’m fine. I’m regaining strength, attitude, and the will to fight this after being off chemo now for about 4 weeks. The last two years of treatment have been a blur in some ways. I’m not sure what has been worse… chemo, surgery, or radiation. Regardless, the result is that I’m still here to write about all this, so they continue to be the lesser of the evils.

Take care everyone.

Tuesday, October 2, 2007

Cancer is War

Before getting into the topic of this entry, a brief update on my upcoming tests. I am scheduled to see the anesthesiologist on Thursday and then have the ultrasound / biopsies performed on Friday. They use the ultrasound to help guide where to take the biopsies. I will be under a general anesthetic, either partially or fully. My guess is more fully than partially due to what they have to do to perform this procedure. It is scheduled to last under an hour and will take place during the afternoon. I should have the results back by Tuesday next week.

I need to set the stage for you for this next part. I have been watching the 15 hour documentary on World War II on PBS. It is called “War” and I’ve learned a lot about history and humanity. Many times while watching this program, I begin to think (or drift) about how closely cancer parallels war. I’m not making any judgment that one is worse or better than the other. I can’t, I have never experienced war and therefore am not qualified to do so. The following paragraph is a letter written by Pilot Lt. Aanesnson on December 5 1944 to his fiancĂ©e, Jackie. He begins the letter by saying he has avoided her questions on what it’s like over there and has painted a somewhat rosier picture so as not to worry her. Following is an excerpt from his letter to correct this false impression. A brief warning, this is pretty graphic, so if you’re not up for it, I suggest not reading the rest of this entry.

Lt. Aanesnson writes, “…so let me correct that [the war environment] right now. I still doubt that you will be able to comprehend it; I don’t think anyone one can that has not been through it. I live in a world of death, I watch my friends die in a variety of violent ways. Sometimes it’s just an engine failure on take off resulting in a violent explosion, there’s not enough left to bury. Other times it’s the deadly flak that tears into the plane, if the pilot is lucky the flak kills him, but usually he isn’t and he burns to death as his plane spins in. Fire is the worst, in early September one of my good friends crashed on the edge of our field. As he was pulled from the burning plane the skin came off his arms, his face was almost burned away, he was still conscious and trying to talk, you can’t imagine the horror. So far I have done my duty in this war. I have never aborted a mission or failed to dive on a target, no matter how intense the flak. I have lived for my dreams for the future, but like everything else around me, my dreams are dying too. In spite of everything, I may live through this war and return to Baton Rouge, but I am not the same person you said goodbye to on May 3rd. No one can go through this and not change, we are all casualties. In the meantime, we just go on, someway, somehow this will all have an ending. Whatever it is, I am ready for it.”

The interesting thing about this is that he never sent the letter. He didn’t want to worry her. I debated about putting this in the blog. But, it did a pretty good job of describing how I currently feel about my cancer and situation. Lt. Aanesnson was one of the lucky ones. He is currently alive and read the letter as part of this current documentary. Maybe I’ll be one of the lucky ones too.

Stay well and take care everyone.

Friday, September 28, 2007

Darn!

My doctor called a few minutes ago. He circled back to the radiologist about that small new growth on my face that popped up last Friday. The CAT scan showed a small inflammation. To play it safe, they want me to come in next week, probably early in the week, and perform an ultrasound (painless) and do a needle biopsy (painful). That means sticking a needle into the side of my face at the top of my jaw bone and drawing fluid from the area. It feels hard to me, so I'm not sure how they expect to draw fluid, but that's the plan. I know they just want to be cautious, which is good, but I'm understandably disappointed. Up until a few minutes ago, my next appointment at the cancer center wasn't for about 5 to 6 weeks. I'll get over it, but thought I would share the news. There are many ups and downs in Cancer World. The one thing of certainty in this World is uncertainty.

Take care everyone.

Thursday, September 27, 2007

Great News, yes... but

There is no new news to share since my last posting. I've decided to make this post more like a public service announcement. With cancer, there is always a "but." Yes, my CT scan came up as negative for any evidence of disease. I've read all of your e-mails and comments and the good wishes sent my way. I truly appreciate each and every one of them, more so than you probably realize. As I've thought about this over the past 48 hours, I couldn't have gotten any better news. Yet (that’s the “but”), I'm still skeptical. Maybe it's a defense mechanism, maybe it's the realism in me. I've gotten good news like this before, only to be disappointed with a recurrence. The only real answer in my mind is time. Doctors begin to feel good at two years if there is no recurrence; they consider you cured at five years without a recurrence. Each scan taken going forward that is clean of disease will build on the great news that was started this week. I haven't come up with my long term plan, that too will take some time. For right now, I’m going to rebuild my stamina from the chemo and enjoy the respite.

I shared with you a story on Randy Pausch a week or two ago. He is the Professor at Carnegie-Mellon University with cancer who provided his, "Final Speech." There was a follow up article in the Wall Street Journal today. For those of you that are interested, here's the link.

http://online.wsj.com/article/SB119084081673940375.html

Stay well everyone.

Tuesday, September 25, 2007

Negative

I’ll cut to the chase. I spoke to my chemo doctor a few minutes ago. The results from yesterday’s CT with contrast scan were “negative, but complicated.” They were “negative” for any definite signs of cancer; that’s great news! The assessment is “complicated” by the many areas on the scans which are abnormal, but can probably be accounted for by the past surgeries and radiation. My doctor is going to contact the radiologist one more time today to confirm his initial finding and ask him to look closer at that area where there is small new lump on my face. I’ll talk to him again later this week. It doesn’t mean I’m cured, there is still the possibility of micro cancer cells that will eventually be detectable, but I could not have gotten better news today. There are many thoughts that are going through my mind right now. I’ll write a brief paragraph on each of them.

Negative. Since when is negative a good thing? Many years ago, about 30 (we were still kids), I got a call from my wife’s doctor. It was our home phone; there were no cell phones back then. I think she had just had a mammogram. The doctor said, your wife’s results are negative. Note, this is probably before HIPAA (Health Insurance Portability and Accountability Act – i.e., medical privacy) too. I was stunned. I said, what do you mean negative? Isn’t that bad? The doctor probably thought I was a complete idiot, but kindly explained that it was negative for disease and that was a good thing. I won’t make that mistake again.

What’s next (short term)? I asked my doctor this question. Given that there are no changes from the initial radiologist’s report, he said we may just want to watch that new lump area, maybe biopsy it (with an emphasis on maybe), and probably begin a monitoring program (e.g., periodic scans). No more chemo for now.

What’s next (long term)? By this, I mean getting back to my new normal. I wrote about this in the blog a month or so ago. Getting back to my new normal could take a few months, but then what? I may actually live. A little history refresher on my treatment and prognosis is in order. In May 2006, my surgeon did a laser surgery on me and could not get clean margins around my cancer. In July 2006, I had major surgery. My doctor said that without this surgery I would be dead within a few months. With this surgery, there was a 15% chance of a cure. It was a tough decision. The surgery disabled me physically, but I was “negative” for detectable cancer for 5 months, until December 2006. At that point, my surgeon mentioned palliative care. That’s where you go when they stop looking for a cure and focus on treating the symptoms and making you comfortable until you expire. He also suggested a re-visit with my chemo doctor. By the way, to be fair, my surgeon was not pushing palliative care, but he did mention it as an option. From December 2006 to September 2007, I have been on heavy toxic doses of chemo plus had one more surgery to remove the last detectable cancer spot. That surgery was in June 2007. Based on all this, I’ve been consumed by the high likelihood of death in the near future. Today’s scan result will make me rethink this. It hasn’t totally sunk in and I have some recovering to do from the chemo, but then what do I do? I'll need to give this some thought. When I have some answers, I’ll write about it.

Thank you again for all your good wishes and support.

Take care everyone.

Sunday, September 23, 2007

Scan and Exam on Monday

It’s been a bit of a nerve racking few days. On Friday afternoon a new small lump appeared on my face. It wasn’t there Wednesday during my clinic visit with my chemo doctor. Like a noise in your car that isn’t there when you bring your auto in for repair. It’s about the size of a dime, although not round, and about a quarter inch think. It is right in front of my left earlobe. It could be nothing, it could be a small malignant tumor that will grow in size, or it could be something in between. My guess is that it is something and that something isn’t good. My disease has certainly impacted my optimism. Actually, I never really thought of myself as a true optimist, but more as a realist who tried to make the best of each situation.

I have a CT scan (not a PET scan as I had written a few days ago) of my head and neck areas and an X-ray early Monday morning. By the time most of you read this, I’ll probably have those behind me. I’m planning to stop in to see my doctor tomorrow after my scan/X-ray so that he can see this new growth and maybe put it into perspective when he gets the scan results in a day of two. Speaking of scan results, they're rarely ever definitive. There is usually a fair amount of qualitative assessment, at least that's my experience. So, while I may be in scan limbo today, it's possible, or probable that I'll be in post scan limbo once the results are in. Given this new lump, maybe that's the best I can hope for right now.

If it wasn’t for this latest development, I’d be feeling pretty good. I’m regaining my energy and feeling part way human after 9 months of chemo. The market is up and the Steelers are one of 4 NFL teams that are 3 and 0. I may have some decisions to make in the next few days. I’ll keep my fingers crossed for the best.

By the way, I haven’t said this in awhile, but for all those that are keeping up with me via my blog and sending their wishes and e-mails my way, Thank you.

Take care everyone. Enjoy the start of a brand new week.

Thursday, September 20, 2007

Wall Street Journal Article

This was in today’s WSJ newspaper (see link below). I wouldn’t write about it here unless I thought it worth passing on. I’d suggest reading the article first and then watching the online video. It caught my attention because it had themes that are in common with my own life: Carnegie-Mellon University, Pittsburgh, Cancer, and even Cognitive Dissonance (I wrote about that concept in a blog entry a few weeks ago). It may also be a good lesson for all of us. Maybe we should all write our “Final Speech.” And as we age, we can refine or re-write it.

A Beloved Professor Delivers The Lecture of a Lifetime

http://online.wsj.com/article/SB119024238402033039.html?mod=home_personal_journal_left

For those that are interested enjoy the article.

P.S. Yes, I know I said yesterday that I probably wouldn’t be updating my blog for a week, but this really caught my attention.

Wednesday, September 19, 2007

Today’s Clinic Visit

This will be short, I promise. I saw my chemo doctor today. There was a low pressure pitch to get my last round of chemo for cycle 8. I decided I could not tolerate the potential side effects, so passed. I’ve said this before, there are no right or wrong answers here, even time will not be able to tell if this was the right decision to make. I have a PET scan being scheduled for Monday. My doctor will call me with the results by Wednesday. Ideally, they will be clean and if so, I can go into a monitoring mode. That would give me a chance to actually recover from 9 months of chemo. If not, we’ll have to move in some direction based on the scan results. I’m not expecting a clean scan, but I sure am hoping for one. My doctor is not convinced that the small lump we feel under my jaw line is cancer; it could be a result of the operation from June or a non-cancerous lymph node due to a low grade infection. The PET scan should provide insight and clarification on this lump.

That’s it for today. See, I kept my promise. I don’t expect to post again for about a week. There’ll be no news until next Wednesday and then I’ll need some time to digest it before writing about it.

Take care, be positive, and stay healthy everyone.

Tuesday, September 18, 2007

Cancer Center Clinic Visit Tomorrow

To catch you up on the side effects from my last chemo, they were one of the worst. I sent my chemo doctor an e-mail yesterday. Here is a portion of what it said…

“Thursday and Friday were horrible, as in the Texas Chain Saw Massacre movie type terrible. The worst was a severe migraine-type headache lasting 48 hours straight that no pain medicine seemed to have the slightest impact on (I even resorted to Advil on top of extra Hydrocodone and Xanax). In addition, my temperature was 2 degrees above normal, I could not get out of bed, I had nausea, my neck tissue was tight, and I had a heavy (but not fast) heartbeat. I was in so much distress that I wanted it to all go away, no matter what. I have some stronger pain medicine left over from my prior salvage surgery in July 2006 but am afraid to take them because they give me a headache… just what I needed to add to my severe migraine. Saturday and Sunday were better, but I was still feeling beat up. Today I'm mostly recovered. By the time I see you on Wednesday I'll probably look good and have energy as if none of these side effects ever happened. But, they did and I can not see how I could tolerate them again, almost no matter how good I feel and look on Wednesday. I'm hoping we can discuss other options (if there are any) when I see you in two days.”

That was the end of the quote, but not the end of the e-mail that I sent to him.

I know this is a war with many constituents (cancer, the treatment effects, and me) and war is never easy. But in the end, all sides are weakened by the fighting and one side usually wins. My doctor sent me a brief e-mail back, which I appreciate, saying that we would confer on my condition and options when I see him tomorrow morning. I hope there are some reasonable options. I am scheduled for chemo tomorrow, but I don’t see this as a reasonable option right now.

There was a large article in the Wall Street Journal today about medical insurance companies cracking down on approving payment for chemo drugs for cancer patients where the drug has not been proven for a person’s specific cancer, but whereas the drug has proven at least mildly successful in some similar type cancers. These chemo drugs I’ve been taking for the past 9 months are very expensive. They run $10 – 40K per month. So far, I have been very fortunate in that my insurance has paid for all of my treatments (surgery, radiation, chemo) minus deductibles and co-pays. Even these add up, but not nearly as much as an uncovered newer cancer drug. I’m reaching the stage of options where the use of an unproven cancer drug for my type of cancer may become the only viable reasonable option for me from a well established cancer institute. There are options, such as IPT, being offered by small cancer clinics. These too are expensive and it is unclear whether or not they would be covered by insurance. The kicker is that there are no guarantees in any case. It’s almost like buying a brand new car at a reputable dealer and it’s sold under the label “buyer beware.”

Well, that’s enough prattling on for this morning. I’ll fill you all in on my next steps within the next few days. Take care everyone.

Thursday, September 13, 2007

Chemo Yesterday

Yesterday’s chemo treatment was worse than usual. Part of it was my mental outlook. I’m still fatigued from the last chemo round, my confidence that the treatment is actually working is low, the anticipation of the side effects (especially the migraine like headache that lasted 48 hours after the last treatment) was high, and needing two sticks to find the right vein put the icing on the cake. On top of all that, it was the 7th anniversary of my mom’s death to lung cancer. She died on September 12th 2000. I wrote this next part to my dad and siblings two days ago…

“I think about her at times. She had a good life and died with dignity in the face of adversity. Cancer is so terrible. It robs your body and leaves your mind intact. My mom was so herself 48 hours before she died, but she was ready to go. I said something to someone yesterday that in retrospect seems a bit dumb. I said I would probably go before I was ready. They said, isn’t that true of most people. It probably is.”

If she could see me and my spouse now, I think she would be saddened by the pain and suffering this disease has caused us. My mom went quickly, 6 months from diagnosis to grave. For us, at least today and the 2.5 years since I was first diagnosed, it feels more like death by a 1000 cuts. I’m looking forward to an improved mental outlook for me and those close to me over the next few days.

We did have some other visits in addition to chemo at the hospital yesterday. My thanks goes out to those doctors and researchers who spent some of their valuable time with us and who are looking for a cure to this insidious disease. Even if their work does not have application to me personally, I have to believe it will help those that come after me.

Tuesday, September 11, 2007

Chemo Tomorrow… Ouch!

Time flies when you’re having fun. Has it really been just two weeks since they last stuck a needle in my arm, 3 times? It seems like just yesterday. This will be the first of two rounds for chemo cycle 8. The next round will be the following week. I saw in my online schedule that my doctor has scheduled a cycle 9, but we had only talked about doing this through cycle 8, so I’m a bit dismayed by this showing up on my schedule. I’ll clear this up with him when I see him next week. I also felt a small lump and had some minor pain right where they did my surgery 3 months ago under my right jaw area for the past 4 days. The lump and pain are gone today, but that put me in a foul mood for a few days. I contacted my chemo doctor about it today and he said not to worry about it. For some reason, that made me feel a bit better.

I’m continuing to investigate the IPT approach that I wrote about 3 blog entries ago. I’ve begun talking to some doctors in the US who perform this therapy. I doubt I’ll do anything with it other than be prepared to go the next step prior to my scans and their results in late September. Other than that, it’s the SOS (same old stuff). Reading, watching golf (great match last Sunday), helping around the house, etc.

That’s it for today. Take care everyone.

Monday, September 10, 2007

Patience

Once again I was struck by how closely Leroy Sievers captured my own situation and feelings. I think he is on a very similar disease timeline with me as far as when I first got cancer and when his current cancer reoccurred. He was the one with the Ted Koppel special in May 2007 that prompted me to begin this blog. His blog is on the NPR website and can be reached at URL http://www.npr.org/blogs/mycancer/. I have taken his entry for today and modified it to my situation. He called his entry the “Tortoise and the Hare.” Consider this a mild form of plagiarism. But in my defense, he tells the story better than I would have.

I'm waiting. I'm in that weird period of limbo known as "between scans." I'm still healing from the operation I had two months ago and the chemo that I’m still going through. I'm still pretty sore and fatigued. So we're giving my body a chance to heal. Time to catch up and repair itself as best it can. In a few weeks, I'll have some new scans. Then it will be time to act. At least that's what I expect.

In December 2006, I had 5 cancer hot spots showing up on my PET scan. Chemo seemed to reduce or eliminate 4 of the 5 to undetectable levels and the fifth was removed via surgery. If the next set of scans show no hot sots or very small tumors -- then maybe we'll just continue to watch. But I doubt that's what we'll see. My cancer is pretty aggressive. I expect we'll see some new hot spots or a return of some of the old hot spots. Some of those were deemed to be in inoperable areas. And, of course, there's always the chance – maybe the likelihood -- that there will be new tumors somewhere else, too. At the time back in December 2006, I was encouraged to visit the palliative care unit. I didn’t know what palliative care meant at the time, but I know now. This is the unit where people go to die. They give you medicine to make you as comfortable as they can, but it is not healing medicine, it is comfort medicine like morphine.

In the meantime, I wait. Now, I'm not a particularly patient person. I'm used to instant gratification. I spent my adult life making project plans, leading large information technology teams, and making things happen… on time and within budget… or else, period. I was used to being in control. Used to being able to make a decision and have it implemented right away. Life moved on my schedule. At least that's what I thought at the time.

Things have changed. And so have I. I have learned patience, because I've had to. My life and my body no longer move according to my demands. I don't set my own schedule any more. And surprisingly, I'm usually okay with that. But then I guess, when you don't have a choice, you have no choice but to accept the way things are. I also credit the anxiety medicine with helping me reach this new state of acceptance and at times tranquility (or sedation). Being into yoga in my youth, and experiencing actual yoga trances, the anxiety drugs do remind me of some of these yoga experiences.

So I'm not counting the days to the next set of scans. But, I will soon push to get them scheduled since they are not yet scheduled. And if they find something, then we'll come up with a plan.

We were all raised on the story of the tortoise and the hare. Of course, most of us secretly sided with the hare, right? After all, the moral of the story, "slow and steady wins the race" is hardly the kind of line to fire the imagination or adopt as a motto for life. But it turns out that it's really true. This is a long race. It’s a marathon, not a sprint. There may still be a long way ahead of me although some days it’s hard to believe that. The tortoise was right after all. Who knew?

That ends the plagiarism and turns me to a new subject. A few blog entries ago, I wrote about a Insulin Potentation Therapy (IPT). Since writing that blog entry, I have reached out to three top major US cancer centers and the NIH about this therapy. I’m guessing that the cancer institutes that I reached out to are in the top 5 or 6 in the US if not the world. On one end of the spectrum, a well respected doctor with expertise in my specific cancer area called the therapy “absolutely ridiculous.” He said a patient of his almost died from the therapy. My cynical reaction was that people die from cancer and its therapies as well. On the other end of the spectrum, there were no active trials going on and the treatment was not in use at any of these facilities nor did any of them offer a referral to places that may be using this therapy. Bottom line, no endorsements. Even though cancer is huge business, I don’t subscribe to the theory that the drug companies or doctors are conspiring to keep a successful treatment out of the hands of needy patients. There are far too many dedicated doctors and researchers who want to find a solution to this insidious disease. So, I’m still balancing the discussion I had recently with a patient who believes this therapy (along with some oxygen therapy) saved his life with the cold shoulder provided by America’s top medical experts in my specific cancer field. I actually found a book dedicated to this therapy for sale a few days ago and ordered it from Amazon.com. I’m not sure I’ll learn anything more than the research I’ve already conducted on the web. I’ll let you all know what I learn as I skim its contents once it arrives.

Enough for today. Take care everyone.

Friday, September 7, 2007

The New Normal

Before delving into the main topic of this blog entry, I’ll provide a brief update on how I’ve been feeling since my last chemo round. Last Wednesday and Thursday (a week+ ago) was pretty tough. I had just finished round 2 of chemo cycle 7. I ended up with a huge headache and used my pain/anxiety drugs to help sleep it off. By Friday, I was able to function again and by Saturday, I was feeling pretty good. Since then, I took a quick, but wonderful trip to visit friends and relatives. The travel was a strain on me physically, but the reunion was worth the effort. Since returning on Wednesday, I’ve just been trying to take it easy and recuperate. I have some new pains in my neck and tongue areas, but they could be a result of my travels or they could be a cancer recurrence. That’s the thing with this disease, you just don’t know and it causes a great deal of anxiety.

Now onto today’s blog topic. I learned a concept in graduate school named cognitive dissonance. If you are not already familiar with the concept, here’s Wikipedia’s definition.

"Cognitive dissonance is the filtering of information that conflicts with what you already believe, in an effort to ignore that information and reinforce your beliefs. In detailed terms, it is the perception of incompatibility between two cognitions, where "cognition" is defined as any element of knowledge, including attitude, emotion, belief, or behavior. The theory of cognitive dissonance states that contradicting cognitions serve as a driving force that compels the mind to acquire or invent new thoughts or beliefs, or to modify existing beliefs, so as to reduce the amount of dissonance (conflict) between cognitions."

What does that have to do with me and this disease? BC (before cancer), I had a concept of myself. I’ll call that the “normal” me. During the first 15 months of treatment which included 3 or 4 surgeries, 35 radiation treatments, and some fairly intense chemo, I did everything I could to maintain the “normal” me. That included working, traveling, socializing, etc. I did some of these things even though they were tough to do because if I didn’t do them, then cognitive dissonance would kick in and make me feel not “normal.” The feeling of being not normal would cause cognitive dissonance. That would drive me back to behaviors which would make me feel normal again. For example, after a neck dissection surgery where they removed 17 lymph nodes from my neck on a Thursday afternoon, a fairly significant operation, I went back to work the following Monday. I had chemo treatments on Friday afternoons, Saturdays, and Sundays so that I could continue working a normal work week. I lost my hair, I lost weight, but still I continued to host client and work meetings and continued with business as normal. I think you get the picture. After my main surgery in July 2006, I knew I would have to come up with a new normal. By December 2006, I came up with that new normal. I was eating without a feeding tube, talking at about 85% of my BC capability, and exercising regularly. I had the new me and was considering going back to work in early January 2007. I’m now struggling again with what this chemo is doing to me and the new normal. My speech capability has probably dropped to 60% of BC due to tightness in my neck tissue or muscles. I’m usually too fatigued to exercise, and eating takes longer and is more difficult. So, once again I’m struggling with cognitive dissonance. Anything that reminds me of why I’m not the new normal makes me feel uncomfortable. The impact is less social interaction, in that way I don’t have to talk and be reminded that I’m not normal. It is eating alone, that way I don’t have to be reminded of what it was like at one time to feel well enough to enjoy a meal with others. This disease has taken a lot from me and those close to me. One of the reasons I like e-mail so much is it makes me feel normal. It allows me to communicate with others in a way that is comfortable. So, if I don’t return your calls right away, please understand why that is. Cognitive dissonance is a very strong emotional driver.

Well, enough about cognitive dissonance. I am getting a bit bored, but I’m still not feeling well enough to be able to make any commitments which involve work. I define work as having to be somewhere at a definitive time and deliver results in line with time and budget expectations. I continue to read, be a chauffeur when I can for our daughter, help her with homework, care for myself, research various cancer treatments, and watch the FedEx cup playoffs. I really enjoy watching Tiger Woods and K.J. Choi. They played in the same grouping today and due to a three hour rain delay, most of their play was on TV. But, it’s not enough. I’m still too weak to exercise, travel is out of the question, and I’ve lost interest in the pottery because I can only throw pieces and not finish them. I’m really hoping that when this chemo ends in 3 weeks (plus add another few weeks for recovery) and the scan come back negative (I’m not really all that optimistic about this, but I am hoping for the best), I’ll be able to get back to the new normal me and will be able to comfortable get back to those activities which I enjoyed last December.

That’s enough rambling on for today. Take care everyone.

Friday, August 31, 2007

Chemo Cycle 7 - Round 2

It's been a few days since I last wrote. I wanted to see how I felt after my chemo treatment that was administered on Wednesday afternoon. It's too early to tell. I've had a pretty wicked headache both Wednesday and Thursday nights, but used my drugs to sleep it off. There is a bit of tightness in my jaw, but not nearly as bad as other treatment side effects, at least so far. The bottom line is that it may be too early to tell how my body will react to this round. Going forward, I get a week off of chemo and then begin Cycle 8. It will consist of two infusions and are targeted for September 12th and 19th. My doctor suggested that we move the scans from mid-September to late-September to coincide with the end of the chemo. I agreed.

Depending on what the scans show, new recommendations and treatment plans will be discussed and a new path will begin. If the scans show I'm clean, that path could include an oral chemo medicine(s) or nothing at all except future monitoring scans. If I'm not clean, that opens up a completely new can of worms and too many options to go into here.

Leroy Sievers had a cancer joke on his NPR blog a few days ago. It’s not really that funny, but it resonated with me. So, here goes…

When a cancer patient dies, why do they nail the coffin shut? [Pause, drum roll]

So the doctors can't do just one more round of chemo.

ha ha

Switching subjects, I was contacted earlier this week by an individual who was diagnosed with head and neck cancer in 1999. I won't go into his history in detail, but he was treated primarily at John Hopkins with 3 relatively minor surgeries (I say relatively minor when compared to what I have been through). He refused chemo and radiation treatments at John Hopkins because after research he was convinced that they were more harmful than helpful. He went to a clinic in Mexico, not too far south of San Diego and had oxygen therapy to build up his immune system and Insulin Potentation Therapy (IPT) to attack the cancer cells. This therapy consists of small doses of FDA approved chemo drugs (maybe 1/10th the normal dose) delivered daily (or every two days) over a few week period. The chemo is mixed with glucose. Cancer cells love glucose. This chemo treatment created minimal, if any negative side effects in this individual, and targeted the cancer cells using the glucose. As a point of interest here, when they do my PET scans, they use glucose combined with radioactive molecules to highlight cancer cell hot spots in my body. Cancer cells have 10+ times the receptors for glucose than a normal cell. The cancer cells take in the glucose and that’s why the radiation becomes concentrated within the tumors and lights up on the PET scan. He has been to this clinic in Mexico three times over the past 8 years and is currently cancer free (or at least no evidence of cancer - NED). That’s a pretty good track record in my book. This procedure is used by some doctors in the US and has been presented to NIH and the major cancer hospitals in the U.S. going back almost 20 years. It was first used to treat cancer in the 1930s. It is difficult for me to get an accurate read on what NIH and the major hospitals felt about this procedure. But, from what I've read, these institutions seemed to say it showed positive results, but needed more study. If my scans in September come back with evidence of disease, this will be an alternative I will fully explore.

That's it for now. Take care everyone.

Sunday, August 26, 2007

Chemo Cycle 7 – Round 1 (Side Effects)

It is Sunday evening, 4 days since my last chemo treatment. This last round has been tolerable. I don’t know if it was the reduced dosage (a 25% reduction in the Gemcitabine), a week off from chemo the prior week, a slight increase in my pain / anxiety drugs or what, but I’m just glad that I have felt pretty good the past 4 days. I have been able to eat (maintain my weight), do physical activity, and be with family and friends.

My next chemo is scheduled for this coming Wednesday. I’ll give a blood sample, see my chemo doctor for a clinical exam, and then get the chemo assuming my blood sample is within acceptable blood count levels. I’m better off than others who have required blood transfusions to keep their blood counts at levels acceptable to continuing chemo. We’ll probably also schedule the next series of scans which are targeted for mid-September. This is high anxiety time. It has been 2 to 3 months since my last PET and CT with contrast scans. That’s when they did the surgery to remove the one and only detectable cancer tumor under my right jaw area. There seems to be so many stories where chemo has not worked. Or, it worked for awhile, but then stopped working. So it seems only rational to me to have a heightened sense of anxiety. I try not to dwell on it however.

I hope you all had a good weekend. Take care.

Thursday, August 23, 2007

Chemo Cycle 7 – Round 1

It is early Thursday morning, about 4:30 AM. I finished my chemo cycle about 9 hours ago. The logistics weren’t too bad. We left home about 3:00 PM and got back a little after 9:00 PM. I always consider it a success when we miss the rush hour traffic. I gave a blood sample and my counts were acceptable. My chemo nurse hit my vein the first time, but with a little fiddling. Still a plus in my book. I’m up this early because the pain medicine I took at 9:30 PM last night wore off a few hours earlier than had I not had the chemo. As such, I took some more and am waiting for it to kick in and then hopefully will fall back to sleep for another few hours. It’s not a lot of pain right now, mostly just a slight headache, nausea, and a minor tightening in my neck area (tissue or muscle, not sure which anymore). The real pain is the anxiety of not knowing how far the pain will go over the next week. This dosage was reduced by 25% from my last cycle, but I’ve learned that the affects of chemo accumulation for me are unknown but tend to be on the more sensitive side than what I believe other patients experience.

I was feeling well enough before the chemo to drive, throw a few things on the pottery wheel (I’m way out of practice – plus, throwing a piece is a long way off from finishing a piece), and setting up a mini golf driving range in my backyard. The driving range looks good, but the temperature here has been in the upper 90s with high humidity, so I’ve had to leave it to just looking good and not really giving it a good workout. I wasn’t feeling quite well enough to begin exercising again. It was only a matter of days until I would have been able to, but the chemo was more important right now.

With all this, life goes on, for me and those around me. It is filled with the joy and happiness of being around friends and family. The best part is seeing good things happen to those close to me. Sometimes I don’t show it, but that really is the best part.

For those of you who missed it and are interested, my younger, but elder of my two brothers had a story and big picture of himself on the upper left hand section on the FRONT page of the Sunday NY Times newspaper two weeks ago. There is also a 5 minute video dedicated to him and his life style within the story published online. The URL link to the story is…

http://www.nytimes.com/2007/08/05/technology/05rich.html?ex=1188014400&en=7f299316dd0d316a&ei=5070

It was fun to have a celebrity so close to home. 98% of the feedback he got from the article was positive.

Thanks again to everyone that is keeping up with me via the blog. I’ll be stopping the mini survey soon. It looks like about two-thirds of you are reading this on a weekly plus basis and the rest a bit less frequently. Take care everyone.

Friday, August 17, 2007

Quicky Update

It's Friday night and today was a good day... finally. The decision to cancel the last chemo treatment this past Wednesday continues to feel even more right to me today. I did some physical activity, saw the Bourne Ultimatum (action packed but with a weak plot), ate 2.5 meals, drank a bunch of water, and generally felt pretty good. Recovery from the chemo takes awhile, but once it starts, it seems like it only takes a few days to fully kick in. So, I expect to have the next 4 days in which to enjoy a brief vacation from my disease before my next chemo round starts. I finished the River of Doubt about Teddy Roosevelt's exploration of the Amazon jungle yesterday. This was a quick read and very enlightening; I highly recommend it. I also wrote a rather lengthy e-mail to my chemo doctor asking him to think about ways to help make future chemo more tolerable. I'm not sure there are any answers to be had here since we talk at length about this in person, but it made me feel like I was doing something to address the adverse side effect issue. Have a great weekend everyone and take care.