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…


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.