It's been 10 years since I was diagnosed with Head and Neck Squamous Cell Carcinoma... cancer. I started this blog to share the many emotions, fears, experiences and, hopefully, triumphs that I will face throughout this journey. I have two goals for this blog, 1. To gain some degree of personal therapeutic benefit and, 2. To help others who may one day face a similar struggle by detailing the process of diagnosis, treatment and recovery so that they may know what to expect.

Thursday, September 28, 2006

One Week Left

September 26, 2006 - As of today I officially have 5 treatments left to go. I should be feeling good about that but frankly, misery has struck in full force. I can hardly speak thanks to the thick mucous that now coats my throat and mouth. It has caused me to gag on several occassions. I also have a number of sores on and underneath my tongue which makes spitting the mucous out very painful. I am tired and lethargic. I can't imagine this getting any worse but fear that it probably will before it starts to get better. People keep telling me how "good" I look but this is euphemistic for "you don't look nearly as bad as I would expect!" Well, whether or not I look it, I certainly feel it. To top things off, the radiation machine stopped working today... IN THE MIDDLE OF MY TREATMENT! Ugggh. This sucks....

Friday, September 22, 2006

"And down the stretch..."

September 22, 2006 - So I guess I'm on the last lap. One and a half weeks to go. Really, not too much new to report. I'm just so ready for this to be over. I'm starting to wonder what it's going to be like once it is over, though. As bad as treatment is, it is still somewhat of a comfort. It gives you a sense of actively fighting this disease. Once that is gone, then what? These last three months have been a whirlwind of doctor's offices, procedures, surgeries... all in an effort to rid me of cancer. Is the fight over after next week? How do I continue it on my own? As anxious as I am to be done with all of this, I'm equally terrified to be left to my own devices.

Dr. Dar told me this week that my skin has cleared up enough to stop taking the antibiotic. Reading between the lines, I think what he was saying was he wanted to make sure the Erbitux is still working without alerting me to the possibility that it might not be.

Since I don't have too much to say, I thought I'd post some pics to show what it is I'm fighting for.

Mason Loves Testudo!

Mason Loves his Mommy!

Mason Loves his... Soccer Coach!

Almost One Year Ago Exactly! Happier Days...

Sunday, September 17, 2006


September 17, 2006 - So my days are now consumed with consumption. I find myself completely pre-occupied with the number of calories that I take in and it isn't easy. As a reminder, I need at minimum 2500 calories and 130 grams of protein each day which would be alot for me even if there was something that I actually enjoyed eating. At this point, my nutrition comes almost exclusively from boost shakes or fruit smoothies, neither of which are the least bit appetizing to me any longer.

[ASIDE] - Wow, this is really strange but the most amazing commercial was just shown on TV. It opens with a man, probably in his 60's walking into a small gathering in his honor. It's September 10th. Not his birthday but his annual "I am alive party." He explains in voice-over that 6 years years ago when he was diagnosed with prostate cancer he thought his life was over. His father and grandfather had both died from the disease and he had given up. Why go through the pain of surgery and chemo when the odds are stacked against him so? But his urologist wanted him to fight and asked if he had any pictures of his family. As he displayed the pictures, the doctor says that he just answered his own question. The narrator then said that it wasn't the surgery and chemo that saved his life but that moment in the doctor's office when he became convinced to fight. The spot closes with an ad for INOVA Health Systems and the narrator saying that this is the way the people are at INOVA. They never give up on a patient. I mention this only because it is timely and inspiring and also because I am being treated at INOVA. They really are good people.

OK, back to counting calories. The one good thing about nutrition from a bottle is that it is pretty easy to keep track of what you're taking in. The Boost Plus shakes have 320 calories and 14g of protein per 8 ounces which is pretty good. There is also a product made by Carnation called VHC (Very High Calorie) that has 560 calories per 8 ounces but judging from the free sample I tried, that stuff could be used in place of Elmers glue if you're ever in a pinch. I don't even want to know how much weight I've lost so far but it is enough that my mask is no longer fitting me properly. So, I need to go in early tomorrow for an adjustment since my last few treatments have required multiple scans in order to line me up properly. This takes extra time and that is not a good thing.

The taste and weight issues reminded me of a web diary that I read the first night I was diagnosed. It was written by a woman in the UK back in 2002 who had the same kind of cancer as I with an unknown primary site tumor. I don't know if it is because she was in the UK or if it was because she went through this 4 years ago but it appears she did not have IMRT but the older XRT radiation that simply blasts a broad area and she had a really tough time of it. You can read her diary HERE. She suffered significant burns, which she is kind enough to post many pictures of, and internal blistering in her mouth and throat. I was most interested in her detailed description of her taste issues which were also significant. Unfortunately, her updates from 2 and 3 years beyond initial treatment showed little improvement and it is clear that this is a source of great distress for her. I can only hope that the fact that beyond my taste issues, the side effects from my radiation have been negligible and the advanced technology that I'm fortunate enough to have access to will ultimately mean that I will be able to enjoy food again... sooner rather than later. Time will tell but if I'm still dealing with this next football season, I'll be distraught.

Michelle and Mason are away for the week. We had a planned vacation at Nags Head and the house was paid for so even thought she was reluctant to go, I insisted. She and Mason could use the time away from all of this. So, I'm a bachelor for the week. Alone with my thoughts and my Boost.

Wednesday, September 13, 2006

Number 20

September 13, 2006 - Today was radiation treatment #20 meaning I have completed 4 full weeks with 3 to go. It feels good to be past the half way mark. I didn't know what to expect going into this but I'm sure I expected it to be worse than it has been to this point. I know I have 3 weeks to go and that the effects are cumulative so I don't want to jinx myself just yet.

Today is Wednesday or the day following my Erbitux treatment which I like to refer to as "hiccup day." They are quite annoying and they're not like normal hiccups that go away after a couple of minutes. They last for up to 15-20 minutes at a time and can be rather violent. I'm afraid I might throw my back out. To be clear, the hiccups aren't caused by the Erbitux but by the Decadron (steroid) that they give me prior to the Erbitux. In addition to Decadron, I'm given Benadryl and Zantac. I hate the Benadryl because it knocks me out. I wasn't going to go in for the Erbitux yesterday because I thought it had been moved to Thursdays. But, thanks to a scheduling snafu, I found myself racing over there at 4:00pm to get it before they closed for the day. You see, they mix the Erbitux the day of the treatment and it doesn't have a shelf life so if they don't administer it that day, they literally have to flush $9,000 down the drain.

I know I complain about this incessantly but the taste thing is just wearing on me. I ate some egg drop soup this evening that tasted like dishwashing detergent (or so I would guess.) I've started to have, and this is not a joke, dreams about food. When I was 16, I worked at a pizza joint and every night, we'd call other restaurants in the area to trade food. There was a Burger King right next to us and in exchange for a few pies, they'd bring over bags upon bags of everything they sold. Good lord did I love trading with BK. So, I had this dream about sitting in the storage room with my co-workers just mealing on Whoppers, chicken sandwiches, fries and shakes until I could barely walk. It's funny, I now worry about how I'm going to consume 2500 calories in a day when back then, I could throw down two or three times that in one sitting. The biggest problem here is that I'm losing weight that I can't afford to lose. I'm afraid to weigh myself at home and I've resulted to tricks each week at the doctor's office to keep them off my back. According to their measurements, I've only lost 2 pounds or so which they are happy with. The reality is I'm probably closer to 8-10 pounds lost at this point. I've managed to wear heavier clothes each week at weigh in and for this last one, I snuck my wallet and PDA onto the scale with me. Next week I'm going to have to shove bricks in my pants.

Friday, September 08, 2006

Almost Half Way

September 8, 2006 - Today was treatment number 16 of 35. Two more and I will be more than half way home. The radiation effects are becoming more apparent every day. I've discussed the taste issues at length already so I won't dwell on that except to say they're certainly not getting any better. I can't imagine it could get worse at this point but I'm sure that I'm probably speaking too soon. Mealtimes are such a dreaded chore now which is one of the most depressing parts about this whole thing. Anyone who knows me knows I've always loved to eat. There is NOTHING enjoyable about food anymore. People that have been through this tell me that it will come back but at the very least we're talking 3-6 months and in some cases, longer than that. I can't even begin to imagine going that long without being able to enjoy a meal. As of now, I'm basically on a liquid or pseudo-liquid diet. Mainly I'm getting calories and protein from Boost shakes which, surprisingly enough, taste normal to me. I'm also drinking Met-RX protein shakes and smoothies from Robeks which have almost no flavor at all. One 32 oz. Robeks smoothie can account for 30-40 grams of protein and 500-700 calories so that's good. I can also get down cold cereals (raisin bran mostly) if I let it get really soggy. Besides this, I'm limited to soups and plain noodles with lots of butter on them. I tried eating some plain turkey tonight and it really irritated my throat which is starting to get sore. You don't notice how many commercials there are for food on TV until you can't eat any of it. Pizza, burritos, buffalo wings, gyros, my sister-in-law's taco pie... ugh. How I miss these things.

A bit of good news this week. My liver enzyme counts that were off the charts last week have come down considerably. It wasn't the Eribitux causing the problem. Dr. Dar and I both think it's one of the supplements I was taking, either Maitake Mushroom extract or Milk Thistle, that caused the liver damage. I stopped taking all of those as soon as I was told that there was a problem so these are the most likely cuprits.

This past Wednesday, Spetember 6th was my mother's birthday. It also happens to be the 3 year anniversary of her death... from cancer. I made the 2 hour drive to New Market, Virginia to visit her grave. As I sat there, alone, in the cemetary, I guess I expected to feel some sort of communion with her or to even see her come walking towards me among the headstones. But instead all I felt were the gnats flying in my ears and up my nose. I sat there for an hour, just talking. I told her that I missed her and that I could really use her help right about now. But, unfortunately, I left feeling somewhat unfulfilled and more focused than ever on the potential of my own impending death.

My mother smoked for almost 40 of her 54 years so when we got the news that she had small cell lung cancer, it really came as no surprise, at least not to me. She managed to survive 18 months from her diagnosis although the end came very suddenly. I regret that I didn't see her more while she was sick. I also regret that I didn't tell her everything I wanted to before she died. Mostly I regret feeling angry with her for what I felt she brought on herself. And yet, I do feel angry. People have the right to smoke because it is legal and we all possess free will. Unfortunately, no consequences are ever suffered in solitude. Second hand smoke is a killer. Our deaths effect many people around us who are left to grieve. Our society is forced to foot the bill for smoking related illnesses through higher taxes and higher insurance premiums. If you smoke, quit. Don't tell me you enjoy it. Don't tell me it's too hard. Don't tell me you only smoke when you drink or that right now, you're under too much stress. Just quit. There are too many resources available today to make it easier to do so. Do you think it's been easy for me to drag myself to radiation treatments every day when I know it's just going to make me feel like crap afterwards? Do you think it's been easy for me to suffer the side effects that my chemo treatments have had on my physical appearance? No and no. But I make the choice to do it because I want to live for my family. If you smoke, you have the same choice to make. It's easy to live in denial by thinking that it's not going to happen to you but the truth is the odds are overwhelmingly against you and they get worse with every cigarette you light. I don't mean to get on a soapbox here but it is my website and this is something I feel strongly about. I know that many people reading this are smokers and a number of you have families. Do you want to die knowing you could have avoided it? Do you want to die knowing that your children are going to be angry with you for the choices you made and the effect that those choices had on them? You're probably saying, "Well look at you, Mike. You've never smoked but you still got cancer." That's true and I wish I knew why. It's probably not a stretch to say that growing up in a house with smokers or having a mother who smoked while she was pregnant with me had some effect. But who knows? Maybe this is just my lot in life. It doesn't change the fact that if you smoke, you do harm to yourself, to your family and to society at large and if you want to quit, it just takes some will and determination. Do it before it's too late.

Sunday, September 03, 2006

Help Wanted: TomoTherapy Repairman

September 3, 2006 - Sorry for the delayed posting. Thanks to Tropical Storm Ernesto, we haven't had Internet connectivity all weekend. As it is, I'm "borrowing" connectivity from someone in my neighborhood who was kind enough to leave his wireless access unsecured.

So this may sound hard to believe (it was for me anyway) but the $5 million state-of-the-art TomoTherapy Machine is on the fritz! Yes, you read that correctly. It had been getting progressively more tempermental by starting then stopping, having to be reset, communication errors, etc., until finally, on Wednesday, it stopped working altogether. I waited an hour in the reception area only to be told that I would not be receiving treatment that day. This is problematic on multiple levels. One, what would missing a day of treatment do to my overall progress, especially since I'll be missing this coming Monday as well for Labor Day? Two, how disconcerting is it to think that the giant microwave that I have to lay in every day may not be working correctly? As for the first issue, Dr. Tonnessen assured my that one day is no big deal but if it were to become three or four days we'd have to come up with a new plan and he admitted that he didn't know what that plan would entail. Regarding the second issue, it was explained to me that TomoTherapy has a staff engineer and a staff physicist on site at all times so they will get it fixed and there is no reason to be concerned about problems occuring while treatments are being administered. To their credit, the machine was working just fine the following day.

Dr. Tonnessen examined me again on Tuesday and this time said that he can no longer feel any tumor. I took this opportunity to ask the question I should have asked last week which was whether or not this degree of progress is to be expected at this point in the treatments. He told me that it is very encouraging and to be this far along after fewer than 1/3 of my treatments puts me "well ahead of the curve." Encouraging indeed!

My encouragement was dampened this week by a call from Dr. Dar's office. Each week, prior to the Erbitux injection, they take blood to measure blood counts and liver function. Last week they called to tell me that my liver functions were slightly elevated and while not a cause for immediate alarm, it is something they would be monitoring. This week they called again to tell me that my liver functions were significantly more elevated. No one wants to speculate as to what this means so, naturally, my first thought is that that the cancer has spread to my liver. I mentioned this to Dr. Tonnessen on Friday and he told me that's impossible. He said it's most likely due to the Erbitux and worst case scenario, we might have to switch to Cisplatin. However, Dr. Dar insists that it is not the Erbitux because, according to him, Erbitux is not metabolized by the liver and there is no case history of liver complications with Erbitux. Instead, he wants to rule out some sort of biliary duct blockage so he has ordered a sonogram which I will have Tuesday morning. I'm concerned. Very concerned. I think I've gotten over my initial fear of liver cancer but something just doesn't add up with all of this. Before I started the Erbitux treatments, my liver functions were just fine. In fact, they tested me a week before starting treatments and they tested me just prior to the first treatment as they do prior to every treatment. It wasn't until after that first dose was administered that my counts started going up. I guess we'll see what the sonogram tell us but I think they're looking for gall stones. If I do, in fact, have gall stones, they will have to be surgically removed.

Now onto my favorite... the weekly bitch session. I now have a collection of ulcers along the left side of my tongue that burn whenever I put something in my mouth. The thought of eating anything anymore has become totally reprehensible to me. Everything tastes the same and that taste is terrible. I can't really describe the taste but I imagine it's something like dirt or burnt tree bark. My throat still feels OK, so thank God for small miracles, right? I've stopped getting on the scale but I know I'm losing weight and am not looking forward to the stern lecture that I will receive this week from Tonnessen's nurse.

As for the rash, it's as bad as ever. I broke down and finally started taking the Doxycycline that Dar prescribed. I guess it's helping a little but it's probably tantamount to using a garden hose to fight a forest fire. The itch is incessant and I've used every topical cream I can think of on my scalp to try to find some relief. Most anti-itch creams last for a couple of hours but I'm still waking up most nights because of it.

Thank GOD college football has started. At least my Terps pulled out a relatively easy, if uninspired win yesterday. Sorry for not posting, Noli, but if you saw me right now, you'd understand why tailgating is out of the question.