A Change in Chemo Plans

It was a tiring day at the hospital yesterday, but it felt good to be out of the house. I would rate yesterday a six on the AFI (Actual Feeling Index) scale. Since chemo ended a week earlier than I expected (see yesterday’s blog), I’ve adjusted the countdown days on the graph to when I think I may start regaining some stamina. The follow up visit with my plastic surgeon was good. No surprises.

A few people have asked since yesterday about how I feel about chemo ending early. I have mixed feelings about it. The negative is obvious. Did I get enough chemo to kill the cancer cells? No one will ever know whether this last treatment made a difference one way or another. I have been on heavy doses of chemo since December 20 2006. That is over 5 months. It has taken a toll on me. I’ve lost 12 pounds which I didn’t need to lose during this period; 7 of those pounds in the last 2 – 3 weeks. The weight loss is due to the fatigue. I’ve been too tired to consume the calories needed to maintain my weight. It makes me a bit anxious to not get the last treatment, but I think this anxiousness is more tied to ending chemo than the last treatment being cancelled. With chemo ending, will the tumors grow back? Will the one lymph node I can still feel, expand? The tests and exams over the next two weeks will help answer these questions, but even good news, if that is the result, will be tempered with… we don’t see any new growth right now. On the positive side, I’m hoping I can begin regaining my stamina within the next week. I don’t want to dwell on this, but it has been a chore to get out of bed for two weeks. Didn’t one of the Beatles stay in bed for an extended time period? Chemo can produce negative long term effects as well. For my drugs, this includes permanent numbness in one’s extremities, immune system deficiencies, and acne-like scarring. Many chemo drugs are cumulative in the body and never leave. That means that future chemo treatments may cause negative side effects sooner and the positive effectiveness is reduced. At least one of my drugs has reduced future treatment and some clinical trial options. My doctor informed me of this going into the treatment but felt a bird in hand was better than two in the bush. I agreed with him. So, it is not really a question of whether or not I could tolerate this chemo treatment for one more week. The answer to that question is that I could have. The real question is whether the benefits of the last treatment would have outweighed the negatives. For this, we’ll never know the answer, no matter what happens going forward. So, together, my chemo doctor, his staff, my spouse, and I made the decision to pass on yesterday’s treatment.

I’m thinking back on something Lance Armstrong said during the “Living with Cancer” special with Ted Koppel on The Discovery Channel in early May 2007. Lance said his secret weapon in winning 7 Tour de Frances was cancer. No matter how tired, cold, and miserable he and the other riders were during the race, he knew real pain more than anyone else that was competing. The cancer taught him to fight that pain and move past it. It is hard for most people, myself included, to relate in any real way to Lance Armstrong. But, I can relate to this concept in some strange way. Cancer, if I have bought some substantial time, has made me a stronger person. Take care everyone.

The Chemo Countdown Continues – 12 days

Yesterday was exactly in line with my earlier projection. I rated myself a 3 yesterday. This is primarily due to the extreme fatigue and also feeling ill for about 4 hours in the morning.

I’m partway through today’s hospital visit. It has not gone as planned. First, I gave blood. Next I saw my chemo doctor. He is concerned about the severe fatigue. He viewed my blood counts and although they were a bit below normal, they did not explain the degree of fatigue. He could see that I was struggling and suggested not moving forward with the last chemo treatment today. I agreed. So, no more shots (the 3 times per week Neupogen shots), no more chemo, and no maintenance chemo (daily Tarceva) right now. The issue of ongoing maintenance chemo will be revisited next Wednesday. He wanted me to get some more blood drawn so that they could do a full chemistry analysis and thyroid test. I went back down to the blood center. They took me right away. They usually draw 1 or 2 small test tubes of blood. For this, they needed to draw two large and one small test tube. They also had to use the same vein as was used in the morning. My veins are not what they used to be. I really didn’t want to be stuck again. On a 0 to 10 pain scale, it is almost a 0 (i.e., no pain), but the emotion of it is taking a toll on me. As the phlebotomist withdrew the needle, she stuck herself. I can’t swear to it, but I think this is the same phlebotomist that was in training one or two weeks ago when I gave a blood sample and the supervisor was angry with her for not being more careful with the needle in the patient before me. She actually told her she would stick herself. She is lucky; I do not have any contagious diseases. So, she’ll be okay. But, they needed to stick me again to draw two more large vials of blood to test for contagious diseases. I felt bad for her.

We’re now waiting to see the Plastic Surgeon. I don’t expect any surprises, but will provide a brief update on that later.

I’m getting a lot of e-mails from people following my blog. Thank you for taking an interest and staying in touch. Take care.

The Chemo Countdown Continues – 13 days

Yesterday turned out to be easier than I had expected. My AFI (Actual Feeling Index) was a 4.5, the same as the past 2 days. Tomorrow will be a busy day at the hospital. I’m scheduled to give a blood sample, meet with my chemo doctor, have chemo, and then have a follow up visit with my plastic surgeon. I think I last saw my plastic surgeon about 6 months ago.

I have two main questions for my chemo doctor. He had mentioned a few weeks ago about leaving me on a chemo maintenance program following completion of this cycle. I assumed at the time that this meant medicine that does not require an IV and that the side effects will be more tolerable. I’ll want to find out more about this tomorrow including the drugs that he is recommending. He did mention them when we talked about this a few weeks ago, but my mind was on other things at the time. My second question is the amount of time to begin recovering my stamina from this chemo cycle. I have estimated it at 11 – 12 days (that’s what the countdown chart is based on), but would like his insight.

I read a good article on chemo fatigue yesterday. It is a result of low red blood cell counts. This is confirmed in my case by my weekly blood analysis lab tests. These are the cells that carry oxygen throughout the body. The less oxygen the body has the less energy one has. Chemo is a shotgun approach to finding (and hopefully destroying) every last cancer cell in the body. Unfortunately, to do that, it attacks every cell in the body including the bone marrow which produces new blood cells. This may be simple or old biology to many, but it is relatively new to me, so I thought I would share it since it’s on my mind the last few days.

I’m not dreading chemo as much tomorrow as the past two weeks. This is a combination of having a better week this week than I expected and it being my last treatment in this cycle. Bottom line, I’m looking forward to getting this over with. Take care everyone.

The Chemo Countdown Continues – 14 days

Yesterday turned out to be easier than I had expected. My AFI (Actual Feeling Index) was a 4.5, the same as the day before. I believe this is the result of low expectations and taking it very ease. Other than one short one hour outing, I haven’t left the house for anything other than hospital/doctor’s visits in about 2 weeks. I spent the day watching TV, reading the Sunday NY Times, and sleeping. Lots of good articles this week in the Sunday NYT: the issues with withdrawing from Iraq (from the Iraq people’s viewpoint), a soldier’s ultimate death due to depression and mistakes by our law enforcement agencies, and how some of the nation’s top colleges are helping the disadvantaged get degrees from their institutions. The paper does a phenomenal job with research and writing.

Speaking of the NYT, if you haven’t seen the movie Wordplay, it is worth seeing, even if you don’t do crossword puzzles. It got a 7.6 rating on IMDb (Internet Movie Database – www.imdb.com). My brother sent it to me and I passed it onto my sister in March. I don’t do cross word puzzles, but have always been impressed with those that can. After seeing the movie, I’m still impressed with those that can, but even more impressed with the people in the movie.

My success for the day was figuring out how to stop an annoying pop up reminder on my computer for renewing the McAfee software security suite. It took me about a month to figure it out, but I think it is gone. I had contacted McAfee a few times, but they never responded and were less than useful. I’m down to one bug on my new laptop with the MS Vista operating system. There is a fix out there from Microsoft, but it is manual, is not specific to their new Vista operating system, takes about 15 steps (some of which are complicated), and requires one to update the computer’s registry files. The instructions warn that the computer may have to be rebuilt if not done properly. The bug takes a minute to workaround each time I reboot the computer, so at this point, I’ll wait for an automated update.

I hope everyone has a good day off of work today, Memorial Day. We should take at least a little time to remember our soldiers. I think I’ll just take it ease today.

The Chemo Countdown Continues – 15 days

There is nothing much new to report on from yesterday. I had a relatively okay day on Saturday. I rated myself a 4.5. (Note, I made the size of the graph smaller on the page, but you can double click on it to enlarge it). I was fatigued, but not in pain. I was able to be out of bed for a good part of the day. Plus, a few friends dropped by and kept me company. One helped with some needed stuff around the house. The other friend and I caught up on current events and watched part of the Crown Plaza Invitational golf match taking place at Colonial Golf Club in Fort Worth Texas. The weather conditions there were anywhere from sunny and dry to torrential downpours. They didn’t finish the Friday cut line until about 3:00 PM Saturday due to weather delays. Not many really big named players (i.e., the top three were not there), not much of a crowd either. Jeff Maggert, one of our local Woodlands’ PGA pros, was doing well at 3 back (-8) tied for 5th place. K.J. Choi, our other Woodlands’ PGA pro was at -4, but not doing as well and tied for 36th place. Still, -4 is a darn good number.

One of the hardest things I had to do yesterday was saying no to my daughter. She and a friend wanted to do stuff outside as it was approaching night time. If I had been feeling better, it would have been no problem. But I wasn’t and knew I did not have the strength to deal with the off chance possibility that one of them could hurt themselves outside. That would have been pretty unlikely, but still a possibilities and I was the adult in charge. I try my hardest to minimize my illness impact on her (and her friends), but was unsuccessful in this quest last night. She was a relatively (and I use that word somewhat loosely) good sport about it. They found inside stuff to do.

I got a good night’s sleep, over 12 hours, and so far his morning I am feeling good. I began the new Michael Connolly book, Darkness More Than Night. One of the reviews said it was his most brilliantly plotted novels ever. Many of his characters spill over from one book to the next. It’s almost like a good TV series, but reading it, not watching it.

Just 15 days to go and I expect to be past the majority of the chemo side effects. Yea!

The Chemo Countdown Continues – 16 days

A few brief items before launching into how I did yesterday. I mention them first because they are more important than how I did. I continue to be amazed and inspired by others people’s generosity. I learned yesterday that a friend is taking a week off of work and has volunteered to be a counselor at a camp for kids with Muscular Dystrophy next week. He flew out last night and is very excited about and committed to helping make sure these kids have a terrific week. I applaud him for giving something back to the community and his generosity. On the closer to home front, I’ve needed some extra help the last few days. Friends have driven me to the doctors, chauffeured my daughter and her friends to places, made us dinner, visited, and stayed in contact with me via e-mail and phone. I still find it a bit difficult to talk on the phone, but love the contact. So, thank you for all the help and the giving.

So, how did I do yesterday? Pretty well and rated myself a 6. A 6 means I was fatigued, but not ill. It also means I have lost some independence. For example, I won’t drive at a 6 level; it’s not worth the risk to others or me.

I changed the graph slightly and got rid of the number of days until the chemo effects diminish. It’s easy to see that number in the title of the day’s blog (i.e., 16 for today) and by getting rid of that number on the graph, it better highlights the expected and actual feeling index bars.

I had a good night’s sleep and am looking forward to a pretty good day today. There’s an okay golf match on TV, but nothing that big in golf is happening until the US Open in mid June outside of Pittsburgh at Oakmont. Pittsburgh is one of the 4 places I have lived in my life. All the big guns will be out for that match. It seems like most of them are currently taking some time off, at least from the US tour. Alan Greenspan went public with his opinion on the Chinese economy two days ago. I’m not really a fan of Mr. Greenspan’s. I don’t know if the Chinese economy is overheated as he says or not, but I think its time for him to disappear from the public eye. The stock market continues to act in an erratic manner. I follow the market pretty closely on a daily basis and the factors that move the market up and down continue to amaze me. That’s it for today, take care.

The Chemo Countdown Continues – 17 days

Well, yesterday wasn’t quite as good as I had hoped. My projection was a 7 on the 1 to 10 scale. A 7 means I should be out of bed and getting around relatively easily without help. There were parts of the day that were a 7, but there were also about 4 hours that rated a 2. A 2 means I was downright feeling ill. So, overall, I give the day a 5. That 5 is reflected on the chart as the darker maroon colored bar for 5/24/07. (Note, one can double click on the graph to enlarge it.) I’m now 2 weeks away from a new series of tests (both PET and CT) and 3 weeks away from finding out how effective this treatment has been. I look at the next 3 weeks as an endurance contest. The participants are me, my cancer, and my treatment. I can still feel the one small lymph node in my neck, but it has not changed in size and no new lymph nodes have appeared that one can feel. There is a chance that the node is dead tissue. That may be wishful thinking, but we won’t know that until the test results are in 3 weeks from now or the surgery to remove the lymph nodes is conducted. If surgery is done, that would take place about 4 to 5 weeks from now. That’s it for today. Take care everyone.

The Chemo Countdown Begins

I had my next to last chemo round today (5/23/07). The last round is scheduled for next Wednesday (5/30/07). We were at the hospital for about 5.5 hours. Add in the round trip drive and it was an 8-hour ordeal. Not an easy feat when you’ve spent the last five days in bed. I had an appointment with the Dental Oncology clinic, but the nurse who set up getting me in to see the doctor quickly wasn’t in today and I had higher priority needs, so this is one that I will have to reschedule. I gave a blood sample. They are so good there. In and out in under 5 minutes. I signed in for my chemo treatment. I have never had to wait less than an hour past my appointment time to be seen, so I thought I’d game the system a bit today knowing that I was checking in 20 minutes early, but that my blood labs would take about an hour to show up. They need those before they can administer the chemo drugs. We then headed to my chemo oncologist’s clinic. He had called me last night to see how I was doing, but I missed his call. I wanted to confirm that the side effects I wrote to him about on Monday were within expected limits. A very nice nurse who I have met with before sat with us (my wife came with me today) and I reviewed the list of negative side-effects. She looked at my labs and at me. She empathized greatly with the side effects, told me which drugs were causing which effects, said I was doing amazingly well, and would talk with my doctor to confirm. She left and then came back a few minutes later with my blood results in hand and let me know they were all within expected limits. Feeling newly reassured, we headed back to the chemo unit. They tried starting chemo about an hour after my appointed time. This was pretty good for them. My nurse tried one vein, but missed. I’m not as hydrated as I should be and the veins are harder to hit. She didn’t want to try again; she made a call to the special IV team. Before the special team had a chance to show up, another nurse asked if he might try. I said sure. He got it and away we went. I watched 7 straight episodes of the HBO series, The Larry Sanders Show, season 1, on my laptop. Very clever. Maybe not quite as good as the three seasons of Arrested Development (long but one of the best, I highly recommend it) or the original 2 seasons of the BBC version of The Office, but definitely on par with Curb Your Enthusiasm.

When we got home, I made an Excel daily countdown graph which shows by day how I think I’ll feel over the next 18 days. By the 19th day, I should be back up to regaining my stamina, so I stopped at 18. The graph is on a 0 to 10 scale. 10 is back to being able to exercise comfortably, 0 is dead. The scale doesn’t hit 0 or 10 during the next 18 days. The high (best) day is projected to be today, a 7. There are about 5 days which are a 2 (lowest point, hopefully). I’ve based this on how my treatments rounds have gone so far.

Last night I finished my Michael Connolly book, The Last Coyote. Without giving the story away, he tied up all the loose ends. Hey, it’s Hollywood. Los Angeles is the venue for most of his books. Having lived in Los Angeles myself for so many years, I like reading about places I know (e.g., make a right onto Sepulveda Blvd from Moorpark Drive). I have another of his books on the nightstand which I’ll start soon: A Darkness More Than Night. If anyone would like The Last Coyote, let me know and I’ll get it to you. First come, first served. Someone already claimed the Larry Sanders show or I’d offer that one up as well.

Take care.

Tough Weekend

The title of my blog is, “Living with Head and Neck Cancer.” I bring this up because for me the emphasis is on “living,” not “cancer.” I try to live each day as best I can within the constraints of my disease. Sometimes however, the “cancer” takes center stage. That was the case this past three days. I’ve mentioned before that the chemo drugs are what makes one feel ill at this stage. For me, that was true in spades Friday through to Sunday. I won’t repeat the side-effects, they are enumerated in earlier blog entries and are already boring to me; I don’t want them to bore you as well.

So, my focus today may be just as mundane, but it captures the highlights of this weekend. 98% of the weekend was spent in bed. I didn’t have the energy to go anywhere else or do anything else.

During the weekend…

I played a great game, Labyrinth, with my daughter. It’s a board game which takes a lot of strategy; she won this time, but not always. I recommend it strongly for ages 8 and up. We’ve been playing this for 5 or 6 years now. We’re quite competitive when it comes to winning. Needless to say, I wasn’t up to my “A” game on Saturday.

Two very good friends stopped by on Sunday afternoon for a few hours. I didn’t know if I was up for seeing anyone, but it made me rally and I think we all had a good time telling stories, listening to some humorous music (“1985” by Bowling for Soup, “I kissed a Girl” by Jill Sobule (she’s been one of my favorites for almost 10 years), and others), and general catching up. My wife and I saw Jill Sobule perform live once in a small venue in Washington, DC on a rainy lightening/thunderous Sunday evening about 4 – 5 years ago. It was a charity benefit for women’s health. Due to the weather, it being a Sunday night, and a small venue, there was not a big turnout. Jill has 6+ CDs out in the major record stores. She invited me on stage with her to hold some sheet music for one of her songs currently under development. After the show, we bought a CD which she signed made out to my daughter. That was a fun evening. If ever given the chance, I’d like to hang out with her sometime.

WARNING -- if you are not into golf, skip this paragraph, it’s long and it’s all about golf. I watched golf, the AT&T Classic at Sawgrass, on Saturday and Sunday. I love watching golf when Tiger Woods is playing. There is a good chance I won’t watch, or watch as diligently, when he is not playing. However, this match really got my attention because the top three players in the world were not playing: Tiger Woods, Phil Mickelson, and Vijay Singh. That left the field wide open. An individual I had not heard of, Ryuji Imada, ranked 61st in 2007 coming into this tournament had the 36 and 54 lead (or co-lead). I liked him and his play. 5’8”, 150 pounds, 30 years old, originally from Japan, but has been here since he was 14 years old. He led (or co-led) 95% of the way through round 4, the final round. I was rooting for him. While he was finishing the 17th hole, Zach Johnson took the lead on the 18th hole with a birdie. Zach won this event last year as well as this year’s Masters at Augusta over Tiger Woods. Zach is also a very likeable guy. On the 18th hole, Ryuji had a very tough chip shot to get it near the hole so that he could tie Zack. He pitched and put it about a foot from the hole. This led to a sudden death playoff back to the 18th hole, a 576 yard par 5 with the last 100 yards (or so) a carryover over water. Sudden death play-by-play. Ryuji hits first. Ball flies 300+ yards, but hangs up just off the fairway about 250 yards from the flag. Zack hits next, it is a terrific tee shot ending up about 225 yards from the flag in the middle of the fairway. Ryuji has a choice here, he can lay up, and then go for a birdie after a relatively easy (for him) wedge or 9 iron shot to the green or he can go for it. From there he can putt for birdie. He was ranked number one in putting for this tournament. His putting was unbelievable. He knows that Zack is going to go for it. It was a close call, but if I were Ryuji, I would have laid up. Ryuji goes for it. It flies straight for the flag. It lands about 15 feet short of the flag… in the water, ouch. It missed the pond bank by about 4 feet. Zack hits his fairway shot. It lands on the front of the green, rolls back to the back of the green, and stops about 45 feet from the pin on the putting surface. Ryuji takes his drop from the drop zone. He is now hitting 4 from about 105 yards out. He lands it on the green and it stops about 5 or 6 feet from the pin. There is a good chance he will save his par. Zack putts. The ball stops 2 inches from the hole. He taps in for his birdie. Game over. If I could have sat up, I would have been on the edge of my bed. I couldn’t really sit up, so I watched this laying down. This tournament was a terrific distraction from my not feeling well.

What else did I do this weekend? I read my two favorite Newspapers. The Friday and Saturday Wall Street Journal and the Sunday New York Times. The Times had a great article about how older people are caught up in scams and how truly legitimate companies, mostly unwittingly (but not all), facilitate these scams. If you think filling out a form to win a free lottery or prize is really “free,” you may want to reconsider this thinking. Your name, address, and phone number can end up on a mailing list which is sold to both legitimate and sometime illegitimate businesses. The scams are ingenious and under the right (or wrong) circumstances, even an astute individual may fall prey to the deception. I also read about 70% of my latest book by Michael Connelly, The Last Coyote. I’ve read about 4 or 5 of his books recently. Good detective story, mystery writing material.

Lastly, I wrote a list of my negative side effects which I will e-mail to my doctor today. I also took my temperature about a zillion times. There are trigger points which will necessitate a trip to the emergency room. I didn’t hit any of them. I want to continue to make sure that I’m healthy enough to get my next chemo treatment. It would be a shame if the chemo gets me before the cancer does.

The above leaves a few questions. What didn’t I do this weekend and is life really so bad? I didn’t help my daughter with her studies although she asked me. I like helping her, but just felt crappy and couldn’t do it. I felt bad about this. I’m pretty sure she understands. I didn’t help around the house. I don’t do that much around the house anyway, but I usually do something. I didn’t chauffer my daughter to school or a friend’s house. My wife and I usually share this responsibility. I like doing things for my daughter and my wife. I didn’t do any pottery. I didn’t go outside. I’m a very active person. So, to answer the above question, is life really so bad? It was really tough feeling very ill all weekend and not knowing how long it will last, but I made the best of it. It is noon on Monday and so far today I’m feeling a bit better. But, once again, I dread going to the hospital for my next chemo treatment in two days.

Make My Day

To help put this short blog entry into perspective, I graduated with a Masters Degree from the Carnegie Mellon Heinz School of Public Administration 30 years ago. Since that time, work has been an important part of my life. Doing the right thing for my clients and company was always a passion of mine and something I took to heart through long hours, dedication, and applying high quality work standards to myself and those with whom I worked. Sometimes, that created its own problems, but on balance, I’m pleased with my accomplishments and career.

My most recent chemo treatment ended about 48 hours ago. The cumulative effects from dose to dose are getting more severe (fatigue, achy flu-like symptoms, rashes) from one week to the next. I was feeling pretty low yesterday after a poor night’s sleep. That is, until the mail came. In the mail was a card signed by a dozen co-workers and past clients (all of whom I liked; some of whom I consider my friends). I had worked closely with this group for over 6 months when I was first diagnosed 2+ years ago. There were so many positive thoughts, remembrances, and good wishes from this group that it absolutely made my day. It was so good to hear from all of you in this way. Thank you for keeping me in your prayers and your wishes for a full recovery. Believe me, it may take awhile, but I’m going to continue to work on my recovery until I can’t. My best wishes back to all of you.

Chemo Cycle 4, Round 4

I went to the hospital today and had my chemo treatment (5/16/07). Same old same old with a few small twists. Last night my back broke out in a severe rash. It came on very suddenly; almost like an allergic reaction. These type of breakouts are a common side effect of Tarceva (a daily chemo pill that I take), but I didn’t realize it could just happen over a 30 minute or less timeframe. Since I am allergic to some bees and one other chemo drug, it had me somewhat worried. I don’t want to deal with anaphylactic shock. I considered calling my chemo doctor, but it was 9:30 PM and I didn’t think this constituted an emergency just yet. I decided to put some prescription medicine on the rash. The itching stopped within 5 minutes. This brings us back to today. Although I had a visit scheduled with both Dental Oncology and Plastic Surgery doctors, I wanted to make sure that my chemo staff felt comfortable proceeding with today’s treatment at the pre-arranged dosage. I checked into Dental, but then went to the Head & Neck Oncology clinic. Two nurses examined me very quickly (within 15 minutes of walking in). I described what happened along with a few other concerns such as fatigue and tingling in my hands and feet. They assured me that the reaction I had last night and the other symptoms were all within the expected side-effects of my treatment. It made me feel better to get that reassurance versus dwelling on it. I then went back to the Dental Oncology clinic. I had been called while I was gone during that 30 minute period. I waited another 30 minutes and was told I’d have to wait another 15 – 20 to see the doctor. I decided to reschedule as I was now about 30 minutes late for the chemo appointment. I registered at the chemo unit and then waited a little over an hour to be called back. This is typical. Chemo took about 3 hours. I called the Plastic Surgeon clinic during the chemo infusion and asked if the doctor would still be there at 3:00 PM. My appointment was for 2:00 PM. They doubted it, but asked that I call back when chemo was complete to check. He had gone onto other duties by the time I called back at 3:00 PM, so I rescheduled for 2 week out. It was a follow up visit and he did a great job, so this delay didn’t really bother me.

I recount this here not to bore you, but to help show the need for flexibility and patience in this process. Being a type A personality can create a lot of frustration due to the long waiting (we once waited 6 hours for a 30 second injection). I’ve learned to move past this frustration about a year ago. You are in control not just of whether you will be frustrated or flexible, but also of your treatment to a large extent. You collect information, you listen to recommendations, you set up schedules, and in the end it is all up to what you decide, not someone else. Given the long drive right through downtown Houston to and from my house to the hospital, I’ve decided I will only go there one day a week and I will do almost anything to avoid rush hour traffic. It means some days may be 16 hours long, but it beats having to drive back and forth and disrupt a daily routine which is important to keeping me as healthy as possible. So, this “one day a week” is MY rule and I’m sticking to it. Good night everyone.

The Countdown Begins

Tomorrow I will receive round 4 (out of 6) of my current chemo cycle. It’s kind of like hump day. By tomorrow afternoon I’ll be more than half way through this chemo cycle. The negative side effects are cumulative from dose to dose, so this past round was harder than the previous one. I’m beginning to learn to not push myself physically during the fatigue periods brought on by the chemo drugs. Pushing myself exacerbates the negative side effects that night or the next day. It does leave me mostly housebound, but it’s temporary and something I can live with for the next few weeks. I’ve also increased my pain and anxiety medicine by about 25%. I’m still at doses that are equal to or slightly less than half of the daily recommended maximums so I feel comfortable with these drug levels.

In addition to receiving the chemo tomorrow while at the hospital, I’ll have a blood sample drawn to ensure I’m healthy enough to continue with the chemo drugs (this is always a cliff hanger for me), I have a follow-up visit with my plastic surgeon following the chemo, and I have a visit with dental oncology to address a side effect which my other doctors are unsure about. The day will be partially busy and partially hurry up and wait. Some clinics (that’s how each area refers to itself – dental oncology clinic, head and neck clinic, etc) are almost always on time, some are never on time. I hope they are working on this issue.

My one infected lymph node under my right jaw is still there, but seems to be the same size (.8 cm) as the last few weeks and is therefore considered under control. No new lymph nodes that I can feel have surfaced. That continues to be good news.

Undecided

It is 3:00 AM Sunday morning. I wasn’t feeling that well on Saturday, so I slept much of the day. That helped. We did enjoy watching Casino Royal at a friend’s house this evening. Good action packed movie for both men and women. I also watched some of the Players Championship (golf) on TV during the day. Tiger is still in it, but 14 strokes back. Shane O’Hair is in the lead over Michelson by 1 stroke at 9 under par. My guess is that Tiger can’t wait to get out of town later today.

I’m partially paying the price right now for sleeping during the day on Saturday, but also because I’m in some pain and discomfort. I may have overdone it on Friday night by playing golf. Although we only played a few holes, I had to sit some of those out because it was too draining on me physically. It is also a bit demoralizing when you’re not up to you’re “A” game and you know it’s not you, but the effects of the chemo fatigue, medicine, and lack of practice. I played double bogie golf instead of bogie golf. This is a significant difference to someone who enjoys the game. Getting together to play was more about seeing my friend, catching up, and getting some fresh air, than the golf, so all in all it was a terrific, but brief, outing. It’s been 5 hours since taking my last pain pill. I usually like to wait 7 – 8 hours between doses. That is what I’m UNDECIDED about; taking a new dose now or waiting an hour or two. My fingers, hands, and toes are tingly and slightly numb. This is a common chemo side affect, but one that my doctor takes seriously as to the toxicity of the chemo drugs. These drugs can result in permanent numbness. I will mention this to him in an e-mail on Monday. He may want to dial back the dosage slightly for next week. The pain though is coming from my bones, mostly in my legs (upper and lower), hips, and arms (mostly lower). This is a common side effect of the Neupogen shot. I’m on a high dose of this drug, 300 micrograms 3 times per week now. Its purpose is to kick your bone marrow into high gear to create more white blood cells. On a 1 to 10 scale, the pain is a 3 or 4. The pain is just enough to make sleeping impossible. I just re-looked at the side effects on one of the Neupogen web sites. Bone pain was the most common side effect and it said it could be address via non-narcotic pain medicine. This makes me feel a bit better; misery loves company and all that. It also makes me feel more comfortable about taking my pain dosage earlier than waiting. It’s now 4:00 AM; I took my medicine and recorded it in my drug log. Undecided no more as someone might say.

I keep telling myself that I’m more than half way through this chemo cycle and the last chemo dose will be at the end of May. That’s only 2.5 weeks out. I plan to see this cycle through to its natural end.

Post Chemo Cycle 4 Round 3 and Misc.

It’s been almost 2 days since my chemo and I’m feeling relatively okay right now. I was a bit shaky last night, but woke up slowly this morning feeling okay. So far today I had breakfast (that’s an effort for me and the only reason I mention it), I took my various medications (pain, anxiety, etc.), went in and got my Neupogen shot, and read my favorite paper, the Wall Street Journal. On Wednesday, my doctor ordered a 3rd Neupogen shot per week to keep my white blood cell count up so that my chemo could continue on schedule. The clinic I go to for the shot is near my house and is open on Saturday mornings. This is so fortunate for me. They are so nice, and the time and energy savings in not having to drive an hour plus each way to get this shot at the Cancer Center is such a relief. The chemo side effects are currently a little bit of fatigue, some tightening of my jaw muscle (which impacts my speech a bit more than usual and my ability to eat), and some tingling (not quite numbness) in my right leg. I feel well enough though that I made some plans for this evening. Keeping these plans will be dependent on the weather and how I’m feeling later.

Now to the miscellaneous stuff.

I’ve received lots of e-mails since posting this blog. Some were from friends and family, some are from friends of friends and family. Some have shared their own personal cancer stories and many have shared their emotions surrounding what I’m experiencing. I love hearing from each of you and hope you will continue to stay in touch either through the blog discussion option or e-mails. If there is anything you want to know or if you have a question which you think others may benefit from, please let me know and I’ll try to respond.

I’ve asked myself hundreds of times why I didn’t start a blog at the beginning or sometime sooner than I did. The answer is that in the beginning I thought I would get better and this whole thing would go away. Two years ago I was told that I had up to an 85% chance of being alive and cancer-free two years out. With each recurrence, the odds kept getting lower and lower. My cancer has so far been resistant to radiation, lots of surgeries, and prior chemo treatments. What is important now is that I not look at the averages. Each case is different, each person is unique, and their responses to the therapies are different. The advice given to me by my doctors and a close friend is that for me it is a zero/one outcome and not an average. That is how I view myself relative to this disease.

One last note before signing off for the day. A group that I neglected to single out and thank earlier are the rehabilitation therapists that have helped me during these last two years. These have included physical (30+ sessions), speech/swallowing (10 sessions), and nutritional therapies. I credit them with getting me as close as I can be back to my new normal self as quickly as possible.

Chemo Cycle 4, Round 3

Something much more important than my trip to MD Anderson Cancer Center (MDA) happened before my visit there this morning. I learned that a long time friend of mine passed away from breast cancer which had spread to many other parts of her body. The doctors gave her 9 months to live 9 years ago. Her motto was, “every day is a good day.” She leaves behind a wonderful family. Her husband and I are close and used to work together. I was fortunate to spend time with both of them this past December. Her girls are about 10 and 12. She got to know them and vice versa. She was incredibly strong and had the will of an elephant, was extremely generous, and had a good sense of humor. I will miss her tremendously. My best wishes and hopes go out to my friend and his family.

So it was with sadness that I made the forty-two mile, one-way trek to MDA. My visit was good. I had blood drawn. From the time I walked into the blood center to the time I left, it was less than 4 minutes. They have their act together.

I then had my clinical exam with my chemo doctor. Again, he is one of the world’s best. There are a few pre-exam steps before getting into see him. I have to register. When I register, I get an Internet user ID and password for my laptop. The entire facility is wireless, something they added about 9 months ago and a terrific benefit to those addicted to the web and staying in touch with others via e-mail. I went to the waiting room. I was then called and had my vitals checked. All were in good condition. I went back to the waiting room. I was called shortly thereafter for a pre-exam check in. We review current medications, new concerns, and new side-effects. Both the vitals and the pre-exam take about 5 minutes. The waiting can take anywhere from minutes to hours. Today they took minutes. I go from pre-exam to an exam room. The Physician’s Assistant (PA) examined me. She is also terrific. PAs have extensive medical training, act as a sounding board for the doctor, and take some of the burden off of the doctor. We spoke, she listened to my lungs and heart, felt my upper body for new tumors, and advised me on how to use one of my medicines. She thought I looked great. My white blood cell count was low and she was concerned about me being able to receive my chemo as planned. I’m taking Neupogen shots 2 times per week to keep my white blood cell counts up. These are the cells that help fight infection. A bit later, my chemo doctor came in. We talked, he examined me for new tumors, none were found. We can still feel the one under my jaw line. If anything, it has remained the same size or is slightly reduced. We agreed on a set of scans (PET, maybe a CT) for the first week in June. The important thing for me and what he is hoping for is that no new tumors appear while on chemo. He said this will be a very positive outcome. I asked if chemo could go on forever. He said that this chemo had to stop (I’m guessing it is too toxic), but he is hoping, with the right outcome over the next month, to try a chemo maintenance program. He also increased my Neupogen shots to 3 times per week. That means a shot on a Saturday, the logistics of which I’ll have to work out tomorrow. He too was pleased with my status. As a side note, I’m 80% recuperated from the prior week’s chemo by the time I see him on a Wednesday. I expect to feel “okay” tomorrow and then the side effects will start kicking in on Friday. Different people react differently to the same regimens.

I went to the chemo unit. Checked in, waited about 30 minutes and then began my treatment. They missed the first vein, so we switched arms and got it successfully on try two. No big deal. There’s nothing like chemotherapy to cure you of your fear of needles. I received my 4 pre-meds, my two chemo drugs, and a bit of flushing in between at times, and was done about 3.5 hours later. One of my pre-drugs is Benedryl. All are delivered via IV. The Benedryl makes me sleepy and so, after watching the end of a pretty good video (Annapolis), I fell asleep for about 2 hours. The machinery there is fascinating; it measures the IV flow per drip and shows one how much quantity remains a few times per minute. The IV procedure and drug verification are efficient and effective. That gives me comfort. It’s like going to McDonalds; you know the fries will be perfect.

I was late for my appointment with my radiologist. But, his nurse paged him and he made a visit. I had not seen him in 18 months. It was a really good visit. He said that my surgeon keeps him updated on me frequently and if it has been awhile, he makes an inquiry. He said he has looked at my scans from Q4 2006 and was very disappointed that the cancer re-occurred. I told him the reason for my visit. Bottom line, so that he can have a current picture of me and my will to live when they discuss my case as a group next month. We discussed some radiation alternatives to surgery or in conjunction with surgery and chemotherapy. I feel very comfortable that he will be able to represent my interests. I thanked him and left.

In summary, it was a good day. I’m always uplifted by the good news---no new tumors, but emotionally cautious as to how long it will last. It was great seeing my doctors and their staff. As you can probably see, as important as the chemo is, it is mundane for me at this point.

In closing, my heart goes out to my friend and his family who I wrote about at the top of this entry.

Getting Ready for my MD Anderson Visit Tommorow

I go to MD Anderson cancer center once a week on Wednesdays. I dread going, but know it is the lesser of the two evils. I'll drive 1+ hour in traffic, park in a garage which reinforces the notion that cancer is big business (1000s of cars), give a blood sample (to ensure I'm still healthy enough to receive chemo), visit with my chemo doctor (great guy, great team -- I have left names out of this blog intentionally for a number of reasons, but if you want names or to discuss your treatment/situation, I'm willing and available), then will receive my 4 hour chemo treatment (4 pre-chemo drugs to reduce side effects followed by PACLItaxel and CARBOplatin), then a visit with my radiation doctor. I haven't received radiation in almost two years, but wanted to update him in person as to my current condition. In mid-June 2007 my three primary doctors (chemo, surgeon, and raditation) will meet as a team to discuss my case and the next course of action. I would like all three to be personally up to date with my current situation when having this discussion and making their recommendations. From start to finish it will be 8 to 10 hours. I have to prepare myself mentally for these days. I don't expect to learn much tomorrow, these visits are primarily follow up and monitoring. My next big learning event will be post new scans in mid June.

I'm feeling relatively well today. The negative side effects form last week's chemo usually begin 24 - 36 hours after treatment and last for 2 - 4 days. The side effects are cumulative, so as I get further into each cycle, they last longer. I'm two weeks into a six week cycle right now.

I plan to spend the day reading, maybe a little pottery, following the market, and working around the logistics of eating and daily medicine intake.

Leroy Sievers - Ted Koppel Cancer Special

There was a 3 hour TV special on the Discovery Channel on Sunday night May 6 2007, "Living with Cancer." The show was hosted by Ted Koppel and featured Lance Armstrong and Leroy Sievers followed by a town hall-type meeting with Lance, Leroy, and Elizabeth Edwards. The audience included oncology doctors/staff, cancer patients, cancer survivors, cancer support organizations, and care givers. There are clips of the show out on the web and can be found easily using Google. There were a few key points communicated that I wanted to recapture here due to their importance into providing insight into how I feel and my situation. I could relate most closely with Leroy Sievers. He is a normal guy with a killer disease. I'm amazed at how well he is doing and how a new "untested" protocol (Radio Fequency Ablation) for his type tumors saved (or significantly prolonged) his life. I must admit, given my situaton, I am a bit jealous by his success, but very pleased by it as well.

1) At this point in my disease, it is the chemo that makes you feel sick, not the cancer. I often think that the cure is worse than the disease. It creates fatigue, sore bones, numbness in the fingers/hands, and a general feeling of just not feeling well, flu-like symptoms that last for weeks (or months). I took a chemo break in February 2007 and the tumors in my lymph nodes grew very quickly. I could feel changes in them almost daily. Now that I've been back on chemo for the past 8 out of the last 10 weeks, only one tumor is visible on the most recent scan and it is small (.8 cm). I feel it daily hoping it will go away. It hasn't yet, but it might with the next week’s treatment.

2) Many people say that I'm brave and courageous to be going through all this. I feel strong and sometimes optimistic, but not brave and courageous. I want to live and this is my chance at living longer with some okay quality of life. As long as my near term quality of life outweighs my death, I will continue to fight daily for those treatments which keep me alive.

3) I want my doctors to be honest with me and proactive in their treatment recommendations. I have let my doctors know this up front and they are honest with me. At times I seem to lead the way as to generating their being proactive. It takes a little prodding at times, but they are respectful of my inquires and suggestions. I spend a reasonable amount of time on the web looking at treatment options. I always write out my questions before seeing each specialist such that I don't forget to ask a question or chicken out in not asking because I don't want to really know the answer.

4) The anxiety created by this disease is intense. I take anxiety reducing medicine 3 times a day. Reasonably low dosages. I also try to do things that take my mind off the disease. This includes listening to my favorite playlist on my MP3 player (about 50 songs out of 400+, mostly 80s stuff), helping my daughter with her homework, throwing pottery on my new pottery wheel which I bought used a few weeks ago, and doing good things for my family and friends. I also really like golf, but the chemo has eaten away enough of my stamina that it is difficult to play right now.

5) Death. This is kind of the elephant (or whale) in the room. I haven't yet been afraid of death, not that I want to die, don't get me wrong. There was one night in January where the chemo sickness was so bad that I thought I would die. The weather had been nasty for about a month and I had been in bed for weeks. I'm generally an active person. I called my spouse into the room, told her it might be my last night on this earth and that if it was, I was ready. I cried a bit thinking about all the people I would be leaving behind. She comforted me for a few hours. I told you earlier that she is terrific. She didn't believe it was my time. I eventually fell asleep and woke up the next morning.

The above ends my recap of what I found important and insightful in the "Living with Cancer" special. Here are a few links to program clips to save a little time in finding them yourself on Google (should you be interested)...

http://dsc.discovery.com/convergence/koppel/koppel.html

http://dsc.discovery.com/beyond/index.html?playerId=203711706&categoryId=226602802&lineupId=791793396&titleId=792434655

Incredible People and Support

In a strange way there are some positive aspects about having this disease. Don't get me wrong, I wish that it had never happened to me, but since I'm an optimist and like to see the good in each situation, I'll highlight some of those things.

1) My wife and daughter. They have been amazing. My wife is worried, but caring and supportive. She takes care of me when I need it. This has involved an enormous amount of time and energy. She comforts me when I need it. She doesn't complain. She doesn't blame me. She doesn't snap back when I'm anxious or sharp. She wants me to get better, but knows the reality of my situation. My teen daughter is caring and has asked recently how I am. She cares for me greatly, but wants life to be "normal." As such she doesn't ask too often. I think this is normal.

2) My sibings (their spouses) and my dad. They care greatly and have shown their care through frequent visits, staying in touch, small gifts, and sharing with me how I have impacted their lives in a positive manner. I didn't know some of this until I had cancer. It has been truly touching.

3) My personal friends, work friends, and close relatives from around the world. They too care and have shown their care through visits, gifts (some of which have been extravagant), phone calls, e-mails, and most recently IM (srwiser at AIM). They keep me posted on what's up in their life and care about what's up in mine. I share with them the latest updates on my health, good books or DVDs I've read/watched, and news stories of interest. On the whole, I seem to have more people interested in me now than before the cancer. It has helped me see a whole new side of people who are incredibly giving. I am trying to learn from their generosity.

4) My medical team. They are some of the worlds best, they seem to care, they work incredibly hard, and they seem to know me. A few are a bit more distant than others, but on the whole, it is a magnificient team. My expectations are that they be honest wth me, upfront about my prognosis and treatment side effects, that they act as a team, and that they be proactive. I give them an A on the first two items, a B+ on item 3, and a B- on item 4. I dislike going to the hospital. I know it will be a long day, a long drive, a disruption in my daily routine, I'll be poked, proded, and jabbed, and I'll have to wait. Although I'm on time (a personal flaw), I usually have to wait, but the waiting lately has been getting better and the scheduling team much friendlier.

My one disappointment are a few friends who seem to have distanced themselves from my family and myself. Maybe we weren't really good friends or maybe they don't know how to handle someone who is in our situation. I find this sad.

On the positive side, I have a few new friends and pen pals who really seem to care and can overlook my speech and eating disabilities. I like to think of this as true friendship.

My Disability

One of the things that cancer people want is to be back to normal. Head and Neck Cancer is one of the worst cancers. The surgeries are in hard to get to places and leave visible scaring, the funding for research is low due to it being a less common type cancer, and the permanent disabilities remind you daily that you will never be back to normal.

My disabilities stem primarily from my July 13th surgery (see Background). 1) My speech is compromised due to removal of some of my soft palette and a piece of my tongue. If I concentrate, I'd estimate my speech ability at about 70% of previous quality. 2) My eating ability is limited to soft foods such as Cream of Wheat, scrambled eggs (fixed just right), and a few other foods. I can eat harder foods, but the effort to chew and swallow overshawdows the joy of eating those foods. I have to wash each bite down with liquid due to removal of part of my epiglottis. It is basically eating via gravity. I also have to be seated or laying in a reclined position to avoid aspirating. I don't eat in front of others wthout a lot of concentrated effort and I can't talk or answer questions while eating. A meal which would have taken minutes to consume before the surgery now takes an hour of careful babying. I get at least 50% of my calories daily from drinking Boost. 3) I have pain in my jaw when I begin eating. It is probably nerve damage from the operation. My doctor says it may be first bite syndrome. It could go away in 18 - 24 months. The pain is severe and I take pain meds to address it. However, they are general pain meds and I dislike taking a general medicine for a specific pain. 4) My stamina while on chemo is very low. I spend a lot of time in bed reading or writing e-mails. 5) The plastic surgery performed by my doctors has been amazing, but the scars are still there and quite visable. 6) I have no hair. Hair today, gone tomorrow. No big deal. It will probably grow back.

Background - Where it Began

I had been thinking of writing a blog ever since I was diagnosed with Head and Neck cancer on April 29, 2005, just over two years ago. It has been a tough journey. I'll try to keep the background brief and factual so as not to dwell on the past. In October 2004, I had a growth removed from my groin area. I had the results sent to MD Anderson. It was diagnosed as a mild form of Sarcoma. The surgery was minor and I had check ups every few months, but didn't think much of it. In December of 2004, I had a severe flu-like sickness. It lasted two weeks. Over the next few months, I noticed my lymph nodes on the left side of my neck were swollen. Antibiotics didn't help to get rid of them. On April 29th 2005 I had a fine needle aspiration procedure performed... 3 minutes later I was told I had Cancer. My life changed as well as that of my wife and to some extent our daughter. Since mid-2005, I have had radiation treatment (35 times over a 6 week period), 5 surgeries, and am currently in my 4th round of intense chemo. My Squamos Cell Carcinoma (SSC) cancer has recurred 3 times.

I continued to work (I was a management consultant traveling extensively, working with Forture 100 executives) through radiation and chemo up until my last major surgery on July 13, 2006. On that day, they did a mandible resection. They removed my left lower jaw bone (and 4 teeth) and repaced it with an 8-inch piece of titanium. On top of the titanium, they placed a piece of my tibia (bone from my leg). They also replaced an area roughly 7 by 2.5 inches of cancer-infected tissue within my throat. The muscle and tissue needed for the "replacement parts" were taken from my lower leg. They grafted skin from my upper leg to cover the surgery from my lower leg. The surgery took 12 hours. I was in ICU for another 2 days and the hospital for a additional 8 days. My doctor told me that I had a 0% chance of living more than a few months without the surgery and only 15% chance of being cured with the surgery. It was a tough decision. Just before the surgery, two of my siblings (and their families), my wife and daughter, and I went on a once-in-a-lifetime trip sailing around the Aeolian Islands off the coast of Scicily for a week and visited Paris for a few days. I decided that I didn't want to miss my daughter growng up or lose seeing my family. It was not until I had a long talk /walk with my daughter from the Left Bank back to our hotel that I made the decision to have the surgery on the last day of our trip.

At this point, the surgery has extended my life by, I'm guessing, at least 9 months. I had no evidence of disease from July to December 13 2006 when a PET and CT scan showed new tumors in three areas of my neck. I was hoping to go back to work in January 2007, but that changed with the new diagnosis. I began a new chemo cycle on December 20th. It's side effects were so intolerable that it put me in bed for 6 out of the next 7 weeks. That chemo was a cure worse than the disease and was stopped in late January to let me recuperate. In March, I began a new 6-week chemo cycle. I'm now on my second 6 week cycle. IV drugs are delivered each week and I take a daily chemo pill---Tarceva. On my last scan two weeks ago I only showed one tumor in the right side of my neck and it had shrunk by 50% from the previous scans. I believe there is other cancer still in my body, but it is not concentrated enough to show up on the scans.

That brings me to where I am today. I plan to write a few more general entries before getting into a daily update.