THursday 12/31/09

Happy New Year!

I am praying that 2010 is a much better year than 2009!

I am done with all my treatments, but the treatment is not done with me yet. As the doctors warned me, I am having more issues this week than before and it looks like this week and next will be the worst.

My mouth is still sore and I am on a fully liquid diet with supplemental nutrition via IV at the hospital 3 days a week. I am hopeful that I will be eating real food in the next several weeks. I am still having pain when I try and chew solid food and it hurts to swallow anything (even water). I am on pain killers and that helps with the swallowing but not the pain of eating.

I am also suffering from the severe burn that the radiation caused and you can follow the line around my neck that shows exactly where the radiation was entering my skin. This area is very delicate and burns and itches constantly. I am still treating this area with Domeboro lotion to prevent my skin from breaking down and then Remedy cream to help heal the area.

I go back to the Radiologist on the 20th of January and should be on the road to recovery by that time. At that time she will also schedule my base line MRI.

I will post again next week, but want to wish everyone a safe and happy new year.

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.

Tuesday 12-15-09

Only 5 more radiation and 2 more chemo sessions left!

I have not updated the blog because I was just so overwhelmed with the constant pain that I pretty much did nothing on Saturday, Sunday and Monday. I also had a case of the blues, caused by the constant pain, but I woke up feeling much better today and am back to my abnormal self!

I have started taking Vicodin on a schedule now (4 times a day), to try and control the pain. I have ulcers on the very tip of my tongue and all along each side which causes my mouth to hurt when I eat, swallow or talk. The ulcer on the tip of my tongue is the most troublesome one. It is hard to keep the pain numbed because the lidocaine wears off fairly quickly and the tip of the tongue is constantly rubbing against my teeth or any food that I try to eat. It will lead to downward spiral if I am not careful. When I try to eat, my tongue hurts so much it kills my appetite and then I don't want to eat.....If I don't eat, I lose too much weight and don't take in enough liquids and dehydrate. Today the doctor asked if we should go ahead and schedule a day for me to come in between Christmas and New Years to have fluids pumped into me. I declined because I am still doing ok taking in liquids and that is confirmed by my blood work. Pictured below is the ulcer on the tip of my tongue. The sides of my tongue are covered with these ulcers as well.

As I have mentioned before, I see the radiology team on Tuesday and on Friday, and the Oncologist on Friday. Last Friday, the radiologist switched me to a new mouth rinse. This one is called Triple Mix. It is Maalox, Benadryl and Lidocaine. When I use it (about 6 times a day) my mouth goes numb like when you have shots at a dentist. This is good for pain, terrible for my clothes because I drool out any liquids I try to take after the rinse. When I brushed my teeth Friday night it was a complete mess, I have had to learn new skills :)

Here is a picture of my radiology team, the lead doctor is the one on the right side of the picture, Dr. Le.

Something else both teams have told me is that even though I finish radiation next Tuesday, the following week should actually be my worst. They have observed this with all the other patients and want me to anticipate this issue. They said that after about a month I should have a surge of recovery and then it tapers off and gets incrementally better taking about a year to fully recover.

At today's session with the radiology team I was also given another process for skin care. I now have to use what is called the Domeboro wash. It is a special skin treatment for the areas of my skin that are showing severe reaction to dryness and radiation, so the middle of my back and both sides of my neck need to be soaked with the wash using gauze pads and letting them sit on the areas for about 20 minutes 3-4 times a day. I am now using Aloe Vera lotion, hydrating cream and the Domeboro wash on my skin.

Also, as you may have noticed in one of the pictures above, I have not shaved since the day before Thanksgiving. My face is too sensitive to handle even an electric razor, so I have the start of a beard, and appropriate for the season, it is pretty much white.

Today's chemo session was uneventful, just as I always hope it to be, and leaves me with only 2 more of these sessions to go. I am just looking forward to getting all this behind me.

Thursday 12-10-09

Single digits! I am down to having only 8 more radiation and 3 more Chemo treatments.

This week has been interesting from the point of view of finally getting most of the nausea under control and my face and upper body are no longer breaking out but all the other side effects are starting to make their being noticed.

My skin is drying out severely, I am having to continuously put lotion on my elbows and hands to keep them from shedding and burning. Where I still have the rash is increasingly itchy and it takes a lot of determination not to scratch it! My facial skin is also so sore and it alternates between burning and aching, lotion helps some but it is still there.

I now have sores on the side of my tongue that are severe and swallowing even water hurts. As of Wednesday, I had resisted using the Vicodin that had been prescribed by the doctor (and told to start using last week) but was having so much pain, I started taking it. Surprisingly, it acted very quickly and while not completely blocking the pain, I was able to function much better. I am not fighting the idea any longer and appreciated the relief from pain. The other side effect that came on strongly this week is the dry mouth. During the day I am able to keep my mouth lubricated with all the rinses and drinking water, but at night it is another story. I woke up on Tuesday morning in pain from the dryness and even after 10 minutes of rinsing and drinking water, the Benadryl pill got stuck in my throat and caused me to gag and choke, no fun. The doctor suggested a humidifier, so after treatment we stopped and got one. It has made a difference and the last two mornings I am waking up dry but not in pain.

I am eating liquids and noodles because I can't tolerate the pain trying to eat anything. The irony of that is my sense of smell has been heightened, so things smell so good, but I can't eat them.

All that said, I am very positive and find as much enjoyment out of each day I can. Stacey and I are finding a lot to laugh about and that helps the two of us. I am looking forward to seeing my daughter this time next week and the end of my treatments.

Monday 12-7-09

Hi all, it is Monday and I don't have nausea. Strange way to start today's blog, but after last week, it is a big improvement. I spent the bulk of last week crippled by nausea. Apologies to the women out there who suffer from nausea with their periods or with pregnancy, boys are wimps and right now I feel like a big one :)

The nausea was so bad that I spent most of last week in bed when I was not at treatment. On Friday, I asked my Oncologist for something stronger than the Tylenol and Benadryl that I was taking to control the nausea. He gave me a prescription for Ondansteron, which costs about $29/pill (thank god for insurance) and only lasts about 6 hours (I still have to use Tylenol to handle the head aches that are a side effect of the anti-nausea drup and Benadryl to control my allergic reaction to the Chemo-nose that does not run, it drips.) I took one of the new pills on Friday afternoon and it cleared up the nausea in about 1/2 hour and I have used the pills sparingly over the weekend because insurance does not like to cover the number of pills I would need to take them on a schedule and I want to make sure I have a few for the times that I absolutely need them. A quick word about my insurance, Blue Shield. I have been very impressed with them, they have been quick with claims and have not given me any issues, other than the anti-nausea medicine, and the reason for that is that nausea is not a main side effect of my Chemo, and therefore not generally covered. The doctor had to claim the nausea was due to Radiation to get the pills covered. I have not added up all the claims yet, but the combined cost of the surgery and Radiation and Chemo treatments are in the $250,000 range. I have only had about $1,000 out of pocket to date on the claim, but I have not gotten the bill from Stanford for my part of the Radiation and Chemo, I think they are saving it to the end, so when I am thankful that the treatment is over I won't mind paying the out of pocket.

This weekend was about taking it easy and listening to my body. The radiation makes it hard to motivate and find the strength to want to do much more than lie around and nap. Friday night we had tickets to go see a stage show of the life of John Lennon, called 'A Day In His Life' ( http://www.adayinhislife.com/), which was great. The performer, Tim Piper, talked about John's life from the first person and explained the genesis of his songs and performed the songs in a chronological order. The band backing him was amazing and the entire night was a blast. We had a crew of 6 of us and we had drinks and snacks before the show as well as a little tailgating in the parking lot before the show (no alcohol for me, my mouth can't handle it.) Sat and Sun were just light days with a lot of football to enjoy.

I did have some major issues with mouth sores over the weekend and had problems with chewing and swallowing which caused me to eat less than I should have over the weekend and I lost 4 lbs from Friday to this morning's weigh-in, good news if this were Weight Watchers, but since it is not, I will hear about it tomorrow when I see the doctor. I am starting to use the lidocaine rinse quite frequently now just to dull the pain in swallowing saliva. I have not gone back to the Vicodin yet, that stuff just dulls me out and I want to delay using it until it is a last resort. The interesting issue again is the 'pleasure/pain' conundrum. I can't taste the food I am eating-thus no pleasure and the pain that is causes it extensive, so the natural reaction is to avoid the pain by not eating. Even smoothies hurt to swallow, so that is not a relief. I have found that if I let the lidocaine sit in my mouth for about a minute, I can get through a short meal, so that is my new ritual. The body is amazing in that, I do not get hungry because the body understands the pleasure/pain issue and does not tell me to eat.

I am down to only 11 more radiation and 4 chemo treatments and counting them down.

Thursday 12-3-09

I had truly expected to be able to update my Blog earlier this week, but the treatment got the better of me and I spent Tuesday night and all day Wednesday (after returning from treatment) in bed. The nausea really came on strong and kicked my butt. Today I was finally able to get back on the computer and do some catch up on work items.

Now for the update.

In addition to the nausea, I am experiencing mouth and tongue sores and have started using the lidocaine rinse more often and actually had to have a little Vicodin on Tuesday. Other than that, I am tolerating the pain and in fact doing much better than my Radiologist thought I would be. She commented that I must have a very high pain threshold to be functioning without more pain meds.

This week they were having problems aligning me so I was sent to check the fit of my mask with the thought of having to rescan me (CT Scan) and have a new mask fit.

View from the Control Room

The radiation technologists must align my body the same every day to ensure the radiation hits the targets correctly. They take X-Rays everyday and a CT scan once a week. The X-Rays, as shown below, allow them to check the alignment and is done by a panel that comes out from the linear accelerator, so once I am on the table they can just do the X-Ray and make the minor adjustments to my body.

I had quite a few folks worried about the alignment so I had my Radiologist, Dr. Le-leaning over me below, her resident, Dr. Chu-behind Dr. Le, the person responsible for all mask production and a few radiation technologist working on this issue.

In the end, they were able to continue to use my current mask and scans by putting a mark on the top of my head. As my doctor pointed out, you have no hair, so this makes it simple. I told her I was highly offended by her characterizing my wide part as 'not having any hair'. We all got a laugh out of the conversation as we usually do on her visits and makes their job that much easier when they have a compliant patient.

For those of you lucky enough not to have seen a CT scanning machine, but have watched House on TV, here is a picture of one of the machines, I do want to point out the they are very quite, in fact, after having about eight scans, I can actually nap while the 45 minutes that they spend scanning goes by. The machine that most TV shows use is the MRI machine, because that is the loud banging machine and is much more dramatic than seeing a machine with a pair of feet hanging out of it, with no sound accompanying the visual. Also, I have yet to see a doctor actually running any of the machines, that what technicians do.....but it looks better on TV when the docs are watching for results (again, note the 45 min it takes to do a scan of just do my head and neck!)

I am now at the half way point for Chemo and looking at only 13 more radiation sessions and so far my blood work continues to show an OK red blood cell count (no anemia from the radiation, yet), my skin burns have been kept under control with Aloe Vera gel and special skin cream, my mouth is developing sores but they are not a major issue yet and my Erbitux (Chemo) rash has peeked and is actually subsiding. The biggest issues I am having is the recurring nausea and forcing myself to eat because the lack of taste buds sets up a situation where the pain I incur when I eat is not worth the pain of chewing and trying to swallow. I gave up trying to eat solid foods yesterday and am now eating soups and smoothies. My weight has been steady this week but I am down about 4 lbs since the start of treatment and now the weight issue becomes critical due to the pain as mentioned above.

I have been following a few other patients going through treatment at the same time I am and feel that I am doing on par or better than most, so I continue to know that I will make it through treatment fine and on my way to recovery after the New Year.