Quarter Mile Mark

August 25, 2006 - Today was my ninth radiation treatment which effectively makes me 25% finished.

I met with Dr. Tonnessen on Wednesday who examined me by feeling the tumor at the base of my tongue. He indicated that it was noticeably smaller, maybe shrinking from the size of a pea to a "split-pea." My initial response was that this is obviously a good thing but it occured to me later that I really don't know if this is something to be excited about after one week of treatment or if this degree of progress is par for the course. I suppose those things aren't mutually exclusive, however, so I'll remain guardedly optimistic. Really, in my mind I was hoping the conversation would go something like this:

Tonnessen - "The tumor is noticeably smaller. It's about 1/2 the size it was last week."
Me - "Is that a good thing or is it to be expected?"
Tonnessen - "It's a very good thing and serves as clear, unequivocal proof that you will be cured and will never have to worry about cancer again!"

Is that too much to ask? As for my weekly meeting with Dr. Dar, he examined the beginning stages of my Erbitux "rash" (read: horrifying acne) and made the comment that at least with colon cancer patients, that rash is considered a good thing because those patients who exhibit it generally do better. Of course, no definition of "better" is offered nor does this necessarily mean that such results hold true for head and neck cancer patients. As he is wont to do, Dr. Dar prescribed me some sort of antibiotic for the rash which, of course, I will not be taking. Don't get me wrong, I really like Dr. Dar but I imagine most medical oncologists like to prescribe alot of medicines. It's what they do.

Now, on to my current condition. The effects of radiation are becoming more prominent. Food has begun to taste different or lose its taste altogether. Many things have a somewhat muted and slightly bitter flavor. Also, the texture of many foods seems different all of a sudden. I tried to eat an apple and had to spit it out. It was like biting into a burlap bag. Even bottled water has begun to taste like it came from a rusty pipe. It just makes the idea of food very unappealing. Mealtime is becoming quite a chore. Fortunately, I don't have any physical discomfort from chewing or swallowing... yet. I know that is yet to come but I'm thankful to have made it through two weeks without it so far. Aside from the taste issues, I am really starting to feel the fatigue of radiation poisoning begin to take effect. I'm not motivated to do much of anything... including update this blog. I want to read more, meditate, work out, catch up on the Terps, etc. but all I've really been able to rally for the past few days is the trip from my bed to my sofa. Thank God for satellite TV. I can't begin to imagine what I would do without it these days.

Besides the radiation effects, the biggest issue I am currently dealing with is the Erbitux rash. To look at me, you'd think that heaven had rained down some sort of terrible pox on me as though I were Pharoah himself holding captive the Israelites. I half expect to wake up tomorrow to find my house covered in frogs or locusts. It is that bad. I'm sure you're thinking that I'm a little paranoid but no... it is THAT bad. It covers not only my entire face including my lips and eyebrows but it is also covers my neck, chest and back. It's in my ears and covers my scalp. No one told me about the scalp. For some reason, that part itches terribly. The sores are generally puss filled like normal acne but unlike normal acne, they seem to die off much more quickly by oozing and ultimately drying out, only to be replaced by three more. What is most remarkable to me about this is that there is nothing gradual about it. It doesn't get worse by the day but, literally, by the hour. I tried to take some pictures to post but none of them do it justice so you'll just have to take my word for it for now. I promise to get some up soon. For fear of frightening small children, I have made the choice to confine myself to the house save for necessary trips for treatment and Mason's football games. It's only for a few more weeks (or so I keep telling myself.)

There is one experience from the week that I wanted to mention. The place where I get my radiation treatment also does PET scans. This week, I noticed a young woman, maybe late 30's or early 40's waiting in the reception area. I assumed she waited for an elderly parent but was suprised to see a young girl, no more than 17 or 18, come out to greet her with the telltale bandage on her arm and goody bag of snacks in her hand. This was her daughter. The mother was stoic and business-like as she instructed the nurse to make sure the results were sent to the right doctors. Clearly she had done this before, perhaps many times. She wanted to make sure that her daughter's new oncologist was consulted and not her pediatric oncologist. It struck me that there may be no two sadder words than pediatric oncologist. I am so thankful that this is happening to me and not my little boy...

One Week

August 21, 2006 - One week down and all in all, I'm no worse for wear. It's late, I'm tired so here are a bunch of random thoughts:

• The stomach issues are still intermittent but all in all, it's not that bad. Yet. This past Saturday was essentially a waste as I just laid around feeling 'blah' watching the Little League World Series and wondering how a 6'8" 250 pound 13 year old can rightly be considered a "Little" leaguer. At times I feel fine and at other times I just feel overly full like whatever I do eat just kind of sits there. Ginger ale helps some. Exercise seems to help too. I'm still doing 25 minutes of cardio each day as well as some light weights to try to maintain muscle mass.
• Since I have to figure out a way to choke down 2500+ calories and 130 grams of protein each day, the whole foods diet is pretty much out, at least for the time being. There is just no way I can stomach that many fruits and vegetables. Between bouts of stomach upset, I've managed to indulge a few cravings which seem to be mostly richer, spicier foods.
• At least I know the Erbitux is working. As of today, the acne rash is in full force. I'm amazed at how quickly and completely it has manifested itself. You can see the progression, literally, from hour to hour. I'll try to post a picture tomorrow but believe me when I tell you most tenth graders have a better complexion than I do right now. Hopefully, the drug is having a like effect on the cancer cells.
• 5 radiation treatments in the books and still no noticeable effects internally or externally. I know it's just a matter of time but I'm hoping that by choosing Tomotherapy, I've spared myself at least some of the horror that I've read about during and after treatments. Time will tell. From what I hear and read, week three is when it really starts to kick in. On an interesting side note, there has been one positive side effect from the radiation which is the scar of my primary incision is much less noticeable and almost completely flat.
• Lingering effects from surgery - I'm still numb on the left side of my neck and around my left ear and ear lobe. The left half of my bottom lip still appears to be paralyzed and I'm beginning to wonder if it will ever get better. On a brighter note, the residual pain in my chest has all but completely disappeared and the range of motion in my neck is probably back to about 95%. The elasticity of the skin in the region is almost completely back to normal.
• I'm really wondering if I made the right choice with Erbitux. Did I just take the easy way out because the effects of Cisplatin are so much harder? I've only got one shot at this so I need to throw everything at it including the kitchen sink. What if I'm not being aggressive enough?
• I found a new site today called the Oral Cancer Foundation. For anyone in this unfortunate predicament, I recommend this site but do so with a word of caution. Yes, there is a wealth of valuable insight and information from people who have experienced this disease but it is also a stark reminder that very many people do, in fact, ultimately succumb to it. I guess I was hoping to see more stories of survivorship, 5, 10, 15 years out but unfortunately those stories are rare on this site. Most of the members are 1-3 years post treatment and that's a great start but it is also tempered with many people who are recurrent, even beyond that timeframe. Plus, it seemed to me that most of the people who cared to post their success stories were not as advanced as I am. I found myself a little depressed and even a little angry after reading through many of the posts but I will continue to visit this site because if nothing else, at least I'll have a better idea as to what I should expect in the coming weeks.
• I'm really, REALLY afraid that I'm not going to be here for Mason as he grows up. Understand, I am not afraid to die as long as I can feel confident in knowing that my boy is old enough to understand, accept it and persevere. If someone told me that I had exactly 20 years to live from this moment but not a second more, I would take it in a heartbeat and not think twice about it.

Thats about all I have for now. I'm going to bed.

So It Begins

August 17, 2006 - Today was day three of my radiation treatments. So far, I'm feeling no noticeable effects from the radiation but I have begun to feel the effects of the Erbitux. Actually, I don't think it's the Erbitux itself that has been bothering my but the steroid that is administered prior to the Erbitux... at least that's what Dr. Dar tells me anyway. It's probably some combination of both but it's to be expected, I guess. I started feeling it yesterday with a case of the hiccups that just wouldn't go away. Later, I began to feel a sense of indigestion at which point I called Dr. Dar to see if this was normal. He said it was and offered to call in a prescription which I declined. Then he recommended Prilosec OTC which, begrudgingly, I've begun to take. If you haven't figured it out by now, I do not like taking medicine. Not because I'm adverse to it but because I don't like the idea of so many foreign substances in my body. The Erbitux is bad enough. Anyway, the indigestion is a little better today although I have had a sort of uneasy feeling in my stomach most of the day. Not nausea per se, but a slight queasiness with an accompanying feeling of rocks in my stomach. To top it off, the steroid makes you restless so even though I was dead tired last night, I had trouble sleeping.

So back to radiation. I met with a oncological nutritionist after my treatment today to discuss diet planning and strategies to maintain proper nutrition if and when it becomes difficult for me to eat. Basically, I need to figure out a way to take in about 2500 calories and 120 grams of protein per day. That's a lot. Especially on an upset stomach. So, I'm going to have to augment the whole foods diet with some richer, fattier foods, especially while I can still eat comfortably. I will also have to add some protein and other supplements. We talked about the supplements I'm on now (the list of which has grown substantially) and she gave me some do's and dont's. This is a subject that I've been meaning to touch on and will in another post as it is very confusing to me. The good news... after tomorrow's treatment I'll be more than 10% done. Hopefully the stomach issues only last a couple of days at a time. For now, here are some pictures:


This is me on the bed, about to be scanned.



This is the TomoTherapy machine.



Here is a close up of the mask. You can see how tightly bolted down it really is. Now imagine laying like this for 30 minutes at a time!




Finally, the effects of the mask on the skin. It takes about 30-45 minutes for the "lizard" look to wear off.

One Down

August 15, 2006 - 34 treatments left to go. All in all, I'm no worse for wear. After spending a few hours in the office this morning, I made the 20 or so minute drive to Fairfax for my 11:15am Tomotherapy appointment. I was a little late and Michelle had already arrived ahead of me. Our first meeting was with a social worker who was very nice and wanted to know how we were both coping, who our support was, etc.... After about 20 minutes with her, I was shown to the treatment room while Michelle stayed behind and continued to chat.

I was instructed to lay supine on the platform while my head was positioned properly on the headrest and my mask was fitted. I'm not going to lie, the mask sucks. It truly is uncomfortable, both physically and mentally, moreso than I remembered. Not only does it prevent you from moving your head laterally but it actually constricts your face so you can't really talk or even open your eyes completely. Since it is snapped down to the platform, there is quite a bit of downward pressure applied and the plastic is not very maliable at all. In fact, because it is plastic mesh, the meshing begins to dig into your skin after a few minutes. If you're at all claustrophobic or anxious, I would recommend a valium or something prior to the treatment.

Before the treatment began, the technician had to calibrate my position which is done to the millimeter. It is very precise. Unfortunately, this significantly adds to the time in the mask. During this time, I tried to control my anxiety by concentrating on my breathing. The trick is to focus all attention on the exact spot where air is inhaled and exhaled. Close your eyes and see that spot in your mind, as though you are looking at yourself. Not only does this help control your breathing and, in turn, your anxiety but it forces you to not think about the pain of the mask or whats going on around you.

Finally, the radiation began and I would have to say it didn't take any longer than 5-7 minutes. I kept as still as possible but after almost 30 minutes, that became exceedingly difficult. I couldn't see any radiation beams or where they might have been coming from for that matter but I did hear it. It was like a locomotive chugging in a halo around my head. CHUG chug, CHUG chug, CHUG chug, all the way around my head. I think I felt it also, which I will not even try to describe because I can't. It didn't hurt for what that's worth. When the mask was finally removed, the meshing left quite an imprint on my face and made me look like I had lizard skin. This should not be too much of an issue after the first few treatments since I probably won't be in the machine as long. I dressed and headed straight for my Erbitux treatment.

When I finally arrived at Dr. Dar's office (15 minutes late) for my 1:30 Erbitux appointment, I was still feeling no effects from the radiation. So far so good. The Erbitux injection takes a long time. I was shown to a long room with one wall full of windows overlooking the grounds outside. There was a series of reclining chairs, each with a I.V. infusion machine next to it. Two of the chairs were occupied by miserable looking yet good-natured people. They were both quite elderly and just like at the PET scan, I felt very out of place. A nurse explained the possible short and long term effects of the drug before inserting my I.V. line. They worry about allergic reactions since I'm a first timer so before they start the Erbitux, I'm given a steroid as well as Benadryl. What I wasn't told was that the Benadryl would make me drowsy and after about 15 minutes, I felt completely stoned. Finally, they loaded the Erbitux which was a two hour infusion since it contained both a normal dose and a loading dose. All in all, I was there for about three hours. One interesting thing to note was the conversation I had with Dr. Dar's benefits coordinator before I went in for the treatment. She explained what was going to be billed to my insurance company and the cost of the Erbitux... $9000.... PER TREATMENT! I certainly hope my insurance company doesn't try to bill me for any of this.

By the time I was ready to leave, my buzz had worn off and I was still feeling pretty good. Maybe a little residual drowsiness but I didn't have time for that. I had to pick Mason up from school and get him to football practice by 6:00pm so I could watch him get consistently outrun and overrun by kids twice his size. If he's going to play for Ralph Friedgen in 15 years, he's going to have to work on that a little.

So now, I still feel good. I was able to work out tonight and eat a big dinner. I asked the radiation techs and the social worker how long it would be before I really start to feel bad and they both said probably 3-4 weeks but hopefully not until the 5th or 6th week. I am apparently only the third person to be treated with this Tomotherapy machine and the first is still undergoing treatments so they don't know what type of improvements this machine will have on side effects although they all believe it will be very positive. I'll take some pictures tomorrow of the mask and the procedure and include them in my next post.

T Minus 24 Hours

August 14, 2006 - The day has finally arrived, I start my treatments tomorrow. By the way, I'm sorry for not posting sooner but I really haven't had much to say and I've been very busy at home and at work trying to prepare as much as possible for what I expect will be some type of leave of absence.

People have asked me today if I'm nervous or scared. The truth is that I'm not scared of the treatments themselves. I've resolved myself to the fact that I'm going to feel pretty miserable eventually, it's just a matter of how long it will be before I get to that point. Maybe three or four weeks. Maybe tomorrow. Who knows? What does scare me is the thought that the treatments wont work. I have dreams of going in for PET scans only to find tumors throughout my body. I know that I need to stay positive and expect the best possible outcome but the thought of having to endure radiation and immunotherapy only to find out that I still have cancer is very real and I'm not sure how to reconcile these two opposing perspectives. Does this fear mean that I'm really not being positive? Am I sabotaging my treatments with worry? Great, now I'm worried about that! The truth of the matter is that I am anxious to get started because after tomorrow, I'm one day closer to being finished.

I spent my day by keeping my mind busy at work. My co-workers surprised me with a nice lunch of healthy foods that they all ate for my sake. I could have easily broken down in front of them all had I let myself but I was able to keep it together, thankfully. To know that the people around you care and are willing to show their support in such a way is so helpful. I was really quite touched by the gesture. Tonight, I decided to treat myself to one last guilty meal before I lost my sense of taste so we ordered my favorite... pepperoni pizza with extra cheese and extra sauce. I even drank a coke with it and I'm not talking about the diet stuff. I'm talking the real-deal-super-sugarfied Coca Cola Classic... red, white and you! I've never taken drugs but I did see Trainspotting and I can only imagine that my dining experience tonight was something akin to sticking a spike full of heroin in my arm. In other words, after 8 full weeks without sugar, caffeine, and eating nothing but whole foods, pizza and coke were damn good.

I'm not sure what else to say right now. Scared? Yes. Anxious? Yes. Excited? Yes. Very full? Yes. I think that about covers it for now. I'll have an update tomorrow to let you know how it went.

Waiting

August 8, 2006 - So now I wait. Everything has been finalized, my radiation schedule, my chemo decision (I've decided to go with Erbitux), and my doctors. But I'm one week away from getting started and I'm very anxious. I'll use this week to do some much needed catch-up at work but I can't help but feel I'm wasting valuable time.

Waiting makes you paranoid. It makes you notice things that aren't there and magnifies the things that are. A little pain in my side becomes kidney cancer and an ache in my leg means it has spread to the bone. I wonder about the dynamics of cancer. How long does it take to spread? Where would it go first? Since both infected lymph nodes in my were removed, would it spread to the remaining nodes in that area first or does it get to jump straight to other parts of my body now that it has already completed that step? These are the rambling thoughts of an unoccupied mind.

Since it's been about three weeks since my surgery, I guess this would be a good time to update everyone on how I'm feeling. All in all, I feel good. I'm eating more (although I can't seem to gain any weight since switching to this whole foods diet) and I started working out again. The pain from the surgery has subsided and what remains is tolerable though at times, annoying. The skin on the left side of my chest and along my left jawline is very sensitive and almost feels as though it's been badly sunburned. I attribute this to being stretched as a result of the incision but that is purely a guess. Anything touching it like my shirt, a seatbelt, etc... is uncomfortable. Swallowing is still a bit uncomfortable as well but not because of the sore throat. That's gone. Now it's the muscles around my throat that control swallowing that I feel. But it's not bad. Despite a little residual stiffness, I've regained full range of motion in my neck.

The area around both incisions extending up to and including my left ear and down to my left shoulder is still quite numb. It's really a strange sensation to not be able to feel something touching you although every now and then I will feel a tickle in this area as though a spider were crawling on me or a quick shooting pain that feel like a surge of electricity. I suspect this is part of the healing process.

The incisions themselves look quite good which is a testament to both the skill of my surgeon and my ability to heal quickly. I've been applying copious amounts of vitamin E lotion to the area to improve the elasticity around the incisions and reduce the raised scar tissue. I'm sure I'll always have a scar and that's ok. I want it. Every time I look in the mirror it will serve as a reminder to live life the right way. Plus, I'm sure it will pale in comparison to the psychological scar that cancer leaves.

The Mask

August 3, 2006 - Today I went in for my preliminary CT scan prior to radiation treatments and to be fitted for my mask. In case you're not aware, radiation to the head / neck requires the use of a mask to immobilize the person receiving treatment and ensure that the proper area is treated.

The waiting room of the radiology center at Inova Fairfax Hospital is memorable for one thing. They have A LOT of puzzles. These are big puzzles too, 1000 and 5000 pieces. Do people really do puzzles while they are waiting here? Does anyone possibly have to wait THAT long? Not to mention, there was no discernable place to actually do a puzzle except on the floor and it would seem rather awkward for me to think about grown adults sitting on the floor in public doing a puzzle. Maybe that's just me.

After a brief wait, a radiology technician showed me to the lab where I was instructed to lay on the bed for a CT scan. I knew the drill. This time, there was no injection of contrasting fluid so it was pretty straightforward. This initial CT is to give the doctor a baseline of the anatomy of the tumor which they will measure as it changes (hopefully gets smaller) as treatments progress. Before the CT began, the technician applied a piece of mesh plastic (similar to plastic chicken wire) to my head and began to mold it to the contours of my face. The plastic is hot when they apply it. Very hot in fact. It hardens as it cools. The plastic has a hard border that is clamped down to the CT bed ensuring that I cannot move my head at all. This is awkward and I'm sure for many a very uncomfortable feeling. If you have panic or anxiety disorders or are at all claustrophobic, I'd recommend taking a Valium before this process. It takes about 10 minutes for the mask to harden which I'm sure must seem like an eternity to anyone who gets freaked by this sort of thing.

Fortunately, I have no such problems although I have to admit that even my heart sped up a little. I used some controlled breathing techniques to calm myself. The ceiling tiles are all bare white except for one directly above the CT bed which had a picture of a single tree in a meadow with a bright blue sky and soft billowing clouds behind it. I guess this is meant to relax people? Without my glasses on, I could barely see it anyway so alot of good it did!

After about 5 minutes in the machine, the technician used tape to mark certain areas on the mask, presumably targets for radiation. Once this was done, I was free to leave. This trip was relatively quick and painless.

As I left the technician informed me that I was scheduled to start treatments on 8/15. So now I know when my treatments will begin and end and I have my team assembled. All tolled, I will have had 6 doctors actively participate in my treatment and will have consulted with 4 others. Add to this the many admnistrators, nurses and other medical staff who have cared for me through two hospital visits and countless other appointments. There are so many people in this world who barely have access to any medical services at all. I am very blessed to have so many resources available to me.

Decisions

August 2, 2006 - I met with Dr. Ajay Dar today who is a Medical Oncologist to talk about adjuvant treatments while I undergo radiation. I was anxious to discuss the risk / benefits of the two drugs that Dr. Tonnesen discussed with me which are the traditional chemo drug cisplatin and the newer immunotherapy drug Erbitux.

In general terms, I'm very leary of chemotherapy. Not because of the short term effects; I can handle those. My concern is with the systemic toxicity of chemotherapy and the potential long term effects including damage to the liver, kidneys, heart and immune system, not to mention linkage to secondary cancers. I know radiation has some of these same risks but I don't have much of a choice there and anyway, radiation to the head and neck probably isn't quite as risky as radiation to say, the abdomen. All of the reading that I've been doing hasn't changed my opinion of chemo and, in fact, it has strengthened it.

So, I'm already leaning towards Erbitux. Not that this drug doesn't have its share of side effects and risks, the biggest one being that it's so new we really don't know what the long term effects on my body might be. But I'm willing to take that chance for the sake of a cure to my more immediate problem. Dr. Dar put me at ease by explaining that today, both treatments are considered 'standard of care' meaning they are both FDA approved and, theoretically at least, should show equal or similar effectiveness. He gave me some literature on Erbitux which showed it to be very promising for my type of cancer. Unfortunately, there is no side by side data to show the effectiveness of Erbitux vs. cisplatin. There have been no studies to measure them against each other. There was apparently one study that used cisplatin and Erbitux together but this apparently turned out very badly. It seems that together the drugs caused all kinds of heart conditions and death so the study was terminated early.

I have a few days to decide and I'll use this time to meditate on it so hopefully the answer becomes clearer however I think I already know what I'm going to do. Both drugs are administered intraveneously and would take about 1/2 day to complete although the Erbitux is given once per week during radiation treatments while the cisplatin is only given three times.

At the end of the appointment, I had to give some blood so they can test my blood counts, liver and kidney functions. Dr. Dar asked me to call him as soon as I knew when my radiation treatments would start so we could schedule my next visit.

A Special Message

August 2, 2006 - I got a call completely out of the blue today from Dr. Au. He just wanted to wish me good luck with my radiation treatments and asked me to stop by once in a while to stay in touch.

A bit of explanation is in order given my last post.

On Monday, 7/31/06, I met with Dr. Glenn Tonnesen whom I was referred to by Dr. Califano. He is a well reknowned Radiation Oncologist in Fairfax and as I mentioned earlier, Dr. Au actually suggested that I keep my appointment with him to see what he had to say about a new treatment that his center is using called Tomotherapy. I went into the appointment thinking that I was just going to learn about this new technology but that it would not sway me from decision to use Dr. Au given how comfortable I was made to feel during my visit with him.

Dr. Tonnesen is warm, personable and honest. He explained in detail the side effects that I can expect from the radiation treatments both now and in the future. He made an offhanded comment that I'm sure meant nothing to him but everything to me. As he described the potential lasting effects of the treatment, he said "you'll look back and remember me when you're an old man!" His point, jokingly, was that I would curse him when I'm older but for me it was validation that I will, in fact, live to be an old man. We also talked about my options for adjuvant chemotherapy treatment. Dr. Tonnesen is the first person to tell me that a traditional chemo drug called cisplatin is the current standard of care and something that I should strongly consider. To date, every doctor that I've spoken with has focused on a new drug called Erbitux which was just recently approved by the FDA as a treatment for head and neck cancers. It is not a cytotoxic chemo drug but instead is considered to be an immunotherapy drug that attacks cancer cells in a different way. While it has certain side effects, it does not cause the traditional chemo side effects of nausea and hair loss. Although the potential for this new drug is great and early studies show that it is quite effective in combination with radiation therapy, the risk is that there is not two years worth of data yet to prove its effectiveness over the long term like there is with cisplatin. Having said all that, Dr. Tonnesen then told me (quite uncharateristically for a doctor I might add) that if he were in my shoes, he would choose Erbitux. I will be meeting with a Medical Oncologist this week to discuss these options.

I left the appointment sufficiently convinced of two things; 1. That the Tomotherapy technology was definitely worth strong consideration despite the fact that it would mean travelling much further for my daily treatments, and 2. That I could easily work with Dr. Tonnesen. I now had a big decision to make and I needed some help in making it.

The next day, I emailed my friend Eden who works at Johns Hopkins to ask some of her doctor friends if they have any recommendations. She in turn forwarded my question to several radiation oncologists there as well as a head and neck specialist. Some knew Dr. Tonnesen and recommended him based on that but it was clear that they felt the additional daily drive was worth it for the Tomotherapy machine. Here is the difference as I understand it: Dr. Au uses what is still a relatively new technology in its own right called IMRT (Intensity-Modulated Radiotherapy) which is an iteration of an older technology called 3-Dimensional Conformal Radiotherapy or 3DCRT. The primary benefit of IMRT is that it allows for greater precision in targeting a tumor by shaping the profile of the radiation beam and varying the intensity of the beam over a given area. This is particularly helpful for concave tumor surfaces or tumors that are wrapped around vital organs. The drawback is that it is very labor and computing resource intensive and thus, is very costly. Tomotherapy is a specialized form of IMRT that adds greater accuracy to that precision by incorporating a CT scan before every treatment. Tumors move. Patients aren't always positioned in exactly the same way. Even minute changes in position can lead to unintended damage to healthy tissue which Tomotherapy seeks to avoid. Not surprisingly, I too seek to avoid damaging my healthy tissue. A very good description of the origin and benefits of Tomotherapy can be found here. (As an aside, I'm glad I didn't read this article before choosing Tomotherapy because it focuses on St. Agnes Hospital in Baltimore. I've had very bad experiences there. Among other things, my mother was treated for lung cancer there and I do not believe she received very good care. My step-father calls it a place where people go to die.)

So, after praying on this decision, I finally came to the conclusion that the Tomotherapy was the right choice, despite the fact that I would not be working with Dr. Au and that it was not nearly as convenient in terms of location. My insurance may not cover it either. But the stakes don't get any higher so this is no time to quibble over money or temporary inconvenience. I want the best technology available. I informed Dr. Au's office of my choice.

When he called me, I explained to him my reasons and expressed my gratitude that he would take the time to contact me and wish me well. I also told him that the decision was not easy and that him calling me just reinforced that. Dr. Kin-Sing Au is a caregiver of the highest order and I am sorry that he is not going to be administering my treatments. After we hung up, he called back a couple minutes later and told me that I made the right choice and that the Tomotherapy machine was a better technology. He said that if I were his brother-in-law, he would probably refer me to Dr. Tonnesen as well. I was stunned and quite literally didn't know what to say.

I now have one major decision left which I am agonizing over... chemotherapy or immunotherapy.

Best.Visit.Ever.

July 28, 2006 - Today I had my first appointment with a Radiation Oncologist, Dr. Kin-Sing Au at INOVA Loudoun County Hospital. This was, quite simply, the best Dr. visit I've had since this process started. From the moment I arrived, I knew this practice was going to be different from anything I had experienced so far. The space was warm and inviting. There was a sense of peace and calming in the way the office was appointed. Even the information requested of me indicated that these people were interested in me as more than just a clinical patient but as a person. I was made to feel very much at ease by everyone that I met with.

Dr. Au spoke to me at length regarding my treatment options and my prognosis which he considers to be very favorable. I asked him prepared questions and Michelle took notes. He took the time to discuss every question I had in detail. Much of what we discussed centered around the probable side effects of head and neck radiation which would be administered over a seven week period. Most likely, I will lose my sense of taste and my ability to produce saliva, particularly from my left salivary glands but both of these functions should return over time, at least in part. Ultimately, the lack of saliva and discomfort in my mouth and throat, which will get progressively worse over time, may inhibit my ability to take food orally in which case I would have to have a feeding port inserted into my stomach. None of this comes as a surprise. Over the past week, I've been fortunate enough to speak with two people who have undergone this very treatment for squamous cell carcinoma.

One is a man named Scott who was referred to me by an old friend of mine whom I've had the good fortune of reuniting with through this experience. Scott is a rather fascinating man. A career Marine, he served in Vietnam with my friend's father and lived through a number of harrowing experiences. Given his background and training, he went into his cancer treatments with a bravado that ultimately betrayed him. The treatments were much worse than he expected and in the middle of his treatments, he had to have a feeding tube inserted. Unfortunately, this was done while he was taking chemotherapy and because his immune system had been comprimised, he ended up with a terrible infection that literally almost killed him. All in all, he lost 70 pounds! But, it's now more than two years later and he is cancer free and enjoying retirement. Scott is just now regaining his sense of taste and his ability to enjoy the foods he once loved.

Back to Dr. Au. At the end of the consultation, Dr. Au personally showed me around the office including the treatment areas. He talked to me about the alternative therapies that they offer such as visualization therapies and Reiki. He then took me upstairs to introduce me to one of the Medical Oncologists in his building whom he works with extensively. When we returned to his office, one of Dr. Au's assistants made an appointment on my behalf with the Medical Oncologist so I can discuss potentially adding either chemotherapy or immunotherapy as an adjuvant to my radiation treatment.

All in all, the visit with Dr. Au left me feeling very good. I was especially pleased that he didn't balk at my questions regarding the use of nutritional supplements. This is something I am very confused about and will comment on in a later post. I think that because these people deal only with cancer patients, they are more in tune with our emotional and psychological needs as opposed to just our physical needs. Dr. Au suggested that I keep an appointment that I had already made for next week with another Radiation Oncologist because this other doctor is using a brand new technology and he would like to me hear about it. More on that later.