Tuesday 12-22-09

Today was my last day of radiation treatments and my second to last chemo session. Yeah!

I finished up last week feeling pretty good, in fact good enough to take my wife and daughter, who is visiting for a few days during her college Christmas break, out to do a horse and carriage ride around town and then on to our favorite restaurant, Valeriano's, in downtown Los Gatos. We were joined by our very good friends, Mark and Kim Davis and Bob and Lin Korns. It was a gas! I lasted until about 9pm and then the wheels fell off. I was in bed by about 9:30 and had a terrible time on Saturday and Sunday. My mouth is so sore that I am reduced to Ensure and water as my nourishment. My radiologist has scheduled me for hydration (fluid drip of electrolytes at the hospital) for Wed, Thursday and Sat of this week and then Monday, Wednesday and Thursday for next week so I don't crash.

I now have ulcers on the top and sides of my tongue and below my tongue and the insides of my cheeks, so even breathing hurts right now. I was taking 8 vicodin capsules a day and so today they switched my pain killer to Oxycodone, with instructions to take them every 3 hours. Right now my treatment is more around pain mitigation and watching my food intake. I am down about 22 lbs since the start of the treatment-thank goodness I bulked up before I started. A now and I am fitting into my old jeans (I can always find a bright spot in a situation). I've lost the weight in my butt and waist line, but still have man boobs :) I'll have quite a bit of work once I recover to rebuild muscle tone and strength.

In yet the cruelest of ironies of my side effects, the beard I was growing due to not being able to shave, has been turned into mutton chops as the radiation that has been hitting my chin has caused the hair to thin, so even though there are some whiskers there I still look like I am pimping the 70's. Darn why did I get rid of my double knit leisure suit? Oh and what about my favorite polyester floral print shirt, God what was I thinking back then :)

The Erbitux rash has calmed down on my upper face and intensified on my chin, neck and back. I am having to keep myself from scratching it and it continues to have a burning sensation that is only somewhat relieved by my Domeboro solution and skin cream. The other issue on my chin is that the rash has made the skin so sensitive and my beard bristles (the little that is left) cause pain when I put any pressure on them and in fact, hurt from the wind the other day.

I have been fortunate that, most of the time, the pills I am taking for anti-nausea seems to be working though I still have bouts with it and last Friday as I was going up to Stanford for a visit with my Oncologist, I had a bad wave of nausea come over me and, while at a stoplight, coughed twice and just started yukking up on myself, there was no flexing from my stomach, it was just pouring out of my mouth, my daughter keep feeding me tissues and had that 'deer in the headlight' look, I was more concerned about her than how I felt. The anal retentive person that I am was more concerned with getting anything on my seats, I was able to keep it all on my shirt and pants. Of course this was on the way to Stanford, so I changed into an extra sweatshirt I keep in my car trunk and brushing the chunks off my pants and continued on to the appointment. I figured that of all places to show up like that, the hospital is the right place. As I was being interviewed by the doctor's PA, I had another wave roll in and I bolted for the restroom (successfully) before a second bout of yukking happened.

I also realized why I am constantly cold and my hands feel like ice. The combination of radiation in my Thyroid region and the amount of Vicodin I am taking have combined to lower my body temperature to a steady 97.7 degrees, 2.1 degrees below normal. Hopefully, my thyroid will recover after the radiation, but I forgot to ask today, good question for tomorrow.

Both teams of doctors told me that for the next 3 weeks I will actually get worse instead of better, due to the build-up of the radiation and chemo and it will take about that much time for the radiation and chemo to clear my system. Sometime after that period, once I start recovering, I will bounce back to 50% of normal within a month and then recover to 100% in about a year. As I mentioned before, the last taste buds to recover are the ones that work for Red wine and chocolate-isn't that two of the main food groups? I believe that there are different sized taste buds and the smaller ones that are interlaced below the bigger taste buds allows for tasting many liquids, so I can still recognize most flavors in the milk shakes, smoothies and soups that I was eating last week. Now I can still taste the difference between the vanilla and chocolate Ensures. I stopped trying soups because I can only get down a small amount of food, and I need to make sure every bite (sip) counts and has as much nutrients and calories as possible. Also, by the end of last week, ANY spice in the soup caused my tongue to burn and is too painful to eat.

I should point out that, even though I am having all these side effects from the treatment, both teams of doctors have told me that I have tolerated the radiation treatment much better than most people do. I am very thankful for that..as my buddy Chuck says, I have a bionic body :)

As for the outcome of all this treatment, my oncologist told me today that, between the chemo and radiation, I will be clean and if there is any cancer left in my lymph glands can be removed via surgery so he is pleased with the initial outcome of my treatment. From here, I will get an MRI in about 2-3 months and then a PET Scan 1-2 months later to baseline and ensure I have no cancer. I will have doctors visits every 6 weeks with a rotation between my surgeon, oncologist and radiologist. I will be getting PET Scans every six months after that. When I asked about the chance of recurrence the doctors have been saying that they can only tell you that you don't have cancer and for how long you have been clean, but can't predict if you will get it again :(

I am still very positive about where I am in my treatment and try to find something special about every day and that keeps me very steady emotionally. I am enjoying the interaction on the limited social functions we have been able to attend and am looking forward to Christmas Eve when we are having some friends over to play Wii and drink wine (water for me) and laugh while celebrating life.