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.

Monday 11-30-09 (Thanksgiving weekend update)

Well it sure was a long weekend and a bit since my last update. Let's catch up:

Thanksgiving dinner was great over at Mark and Kim Davis', such great cooks and fantastic hosts and good friends. Lot's of laughs and good food. It was also the first day that I could notice the effects of the radiation killing my taste buds. I could not taste the sweets nor the wine, the rest of the food had good flavor, but the taste buds that read the complexity of wine have deserted me. By the end of the weekend all food officially tastes like soggy cardboard. On top of that, it hurts to chew and swallow now, so I have to force myself to eat. I can see why my treatment team worries over weight and how people can start to get in trouble quickly, I dropped about 3 pounds over the weekend and am down to 211 today.

After having Thanksgiving off, Friday was another radiation treatment day and a check in with the doctor to make sure I had all everything I needed for the weekend, as they are aware that this is about the time in treatment when people start having major 'issues' with their mouths. I have developed a few sores in my mouth where they are shooting the radiation (all to be expected) and am having to rinse with the salt/baking soda rinse as well as the Stanford Mouthwash (oddly enough the only thing I can still taste, although greatly muted, and is less of an effort to use since the taste is reduced) much more often than before. Stacey's mom came up for Thanksgiving and to stay a few days and that evening a few friends dropped by to say hello and we had a nice evening.

Sunday, we went over to the beach in Santa Cruz and had a late breakfast with Stacey's mom and brother Steve, and some friends, Bob and Lin Korns. We went to Aldo's, a little place right in Santa Cruz harbor and had some great weather to dine outside, mid-60s and bright sunshine. The majority of us had crab, avocado, sour cream and swiss cheese omelets, I was eating from memory as most of my taste buds are gone. After eating and laughing, we walked down to the light house and then out on to the beach, it was a very relaxing day.

Today marks the half way point in my radiation treatment with only 16 more radiation treatments, due to finish on 12/22. I still have 5 more chemo sessions and they end on the 29th, so I am looking to close out my health issues by the end of the year and start fresh in 2010! My Erbitux (Chemo) rash is not as severe right now, but still uncomfortable-itchy and it burns, and I will get an update as to what to expect tomorrow when I see my Oncologist. As I mentioned earlier, I am now having issues when I chew and especially when I swallow. It also hurts to talk for too long as well, so believe it or not, I am not talking too much (ok, I know that is still a lot compared to most people-give a guy a break!)

Look for an update tomorrow after Chemo.

Thanksgiving 2009

Happy Thanksgiving everyone!

For me this year's Thanksgiving holds some extra special thoughts. I am in the midst of a personal health crisis, yet feel so lucky to have the breath and depth of support from my wife, my sisters and brother and good friends.

I hope you will tolerate a little indulgence on my part for the following. I am thankful that my mom's health is OK, (at 87 everything is breaking down, but she still has her sense of humor) and that my sisters are close by to care for her. I also look at how well my daughter is doing in school and maturing as a wonderful, beautiful person who makes me proud of her everyday. I am also very blessed to have met and married Stacey, she is such an strong supporter on a daily basis, I can't imagine going through this without her. Additionally, as I mentioned above my friends! I can't thank them enough, we have people who are offering any help at all, and I know they are sincere. To each and everyone of you THANK YOU!

Thanksgiving is a day off from treatment but resume radiation on Friday. I have had my third chemo treatment and did ok with it, a mixture of the last two week's reaction. I had nausea and starting getting a killer headache, so I did as instructed, and took two Tylenol and a Benadryl and my symptoms calmed down but still sent me to bed by 9:00. I got up on Wednesday still feeling a little bit off, but the Benadryl did the trick and I was OK for the day and had some friends stop by for a glass of wine. I had a lot of laughs and feel great, it seems that interaction with people and enjoying myself is a great medication of it own.

I am still not having major mouth issues, but am starting to feel some discomfort and the doctor told me today that I am developing a mouth ulcer where they are radiating. I need to rinse with two of my rinses more (one to slough off the old cells and one to fight infection) he also gave me a lidocaine mouth rinse in anticipation of trouble over the weekend.

My Erbitux rash is still in full bloom, I had a business meeting today and as I sat down the guy just stared at my face, so I had to explain what was going on. Not the best ice-breaker, but it did start the meeting off with some sympathy and as a sales guy, I will always take that advantage :)

I will update again on Friday and want to wish all a great Thanksgiving.

Monday 11/23

Well I had the weekend off from treatment and today started a shortened week of treatment, since I have Thanksgiving off, only four days this week. I am down to 6 more Chemo and 20 radiation sessions!

This weekend, Stacey and I went into San Francisco to meet some friends (JV and Rosita) up from Florida for a business trip and we had dinner at Scoma's on the Wharf in SF and then spent the night at the Hilton just a few blocks away. It was a great time to see JV and Rosita and the food at Scoma's was top notch as always. On Sunday, we got up and met some of our other friends Bob and Lin Korns and John and Leila Weed at the Metreon to view an exhibit by one of the most famous arial photographers, Robert Cameron (who died on Nov. 10th of this year), that featured many of his works from above California (he lived in San Francisco.) Then we went to lunch at a Mediterranean restaurant and on to SF MOMA (San Francisco Museum of Modern Art) to view the Richard Avendon exhibit. For those of you who did not know Avendon, he was a portrait photographer for over 60 years, starting out as a fashion photographer he went on to shoot a diverse group of people from politicians to common working folk and from celebrities and murderers (sometimes I guess that would be a single group.) It was a great weekend, but one that told me I am starting to experience the rigors of my treatment.

I experienced some severe dry mouth, and at one point where I had not sipped any water or tried to speak for about 1/2 hour, my mouth was stuck shut (no wisecracks!) and I had to sip some water to be able to get my cheeks unstuck from my gums. I also ran out of energy early in the evening both days and by the time we got home about 6pm on Sunday, I was ready for bed.

I also am losing my sense of taste (again no wisecracks) and, while I still can taste most food, most of what I am eating has a bland taste to it. I am also not very hungry so I need to be aware of the time and eat by the clock instead of when I am hungry.

The other symptom that really came to light this past weekend was the anceform rash that has fully engulfed my face. It is very bothersome to look at myself in the mirror and see all the bumps and whiteheads that form on my face. It seems that overnight, when I am asleep, the acne subsides and when I get active during the day it gets 'angry' and looks like a 13 year old in a bad puberty situation. The rash also has a burning/itching sensation that requires a lot of discipline not to itch.

Oh well, only a few more weeks of the symptoms and then on to recovery! More tomorrow.

Friday-Saturday 11/20-21

Well I finally fixed my photo upload problem so I will upload some of the pictures of the items I mentioned earlier on my Wed-Thursday Blog.

Here are the mouth products that I use 4-6 times a day for the salt water and baking soda rinse (far right) and the Stanford mouthwash (far left) 4-6 times a day. And then the fluoride rinse and finally the fluoride that goes into my trays for several minutes every night.

On the skin care front, the tube on the right is an antibacterial lotion to keep the acne from getting infected, this gets blotted on twice a day and the aloe vera and skin cream goes on the areas they are radiating to prevent/mitigate the burning of the skin. I am also using the cream on my acne to keep it from cracking as it dries out from the antibacterial lotion. I should point out that this was the first day I showed symptoms of the rash and since these pictures the break out is much worse, but by taking some Benadryl and staying on top of the lotion/cream, it does seem to be contained. The doctor said yesterday that he felt that I had not reached the full effect of the break out, oh good, something to which I can look forward.

When I saw the bumps, I looked at Stacey and said, 'Oh great, and the prom is this weekend!' Have to maintain the humor :) On a positive note both the Radiologist and the Oncologist have commented that it is good that I am reacting so fast to the chemo, they said that is a sign that the chemo is having an effect on the cancer and it is helping with the effectiveness of the radiation treatment.

I am starting to get more dry mouth and both my doctors commented on this during my exams on Friday. In fact, one doctor had the tongue depressor stick to the side of my mouth and had to be careful while moving it around. I am also having issues with getting going in the morning, I seem to be in slow gear for the first hour our so before I can get going. Then I do hit a wall in the evening where I do run out of energy. The doctors have said this is a combination of both the radiation and the chemo working on my body.

Well have a good weekend. Stacey and I are off to San Francisco for a night on the town with some friends, staying at the Hilton on the Wharf and then going to see the Richard Avendon exhibit at the SF Museum of Modern Art and have lunch with Bob and Lin Korns and then some drinks with John and Leila Weed.

Wednesday-Thursday 11/18-19/2009

I decided to combine the two days into one entry as there was not much action either day, only radiation for both days.

My reaction to the chemo this week compared to last week was different in a very pleasant way. While I did get some of the cold hands and feet, I had none of the nausea or headaches that I suffered last week. What I am starting to feel is the reduction in energy levels. It is amazing how fast this has come on. Overall, I am still doing well, just seems like I run out of energy now and again during the day. The radiologist has told me that next week we should see some more effects (negative) in my mouth and throat due to the radiation, so that is something to expect then.

I am seeing the start of some of the acne rash that is the main side effect that the doctors expected to see. It looks a little like a bad case of hives or chicken pox right now, but it will get worse and last while I am on the Chemo and then will fade after the drug starts leaving my bloodstream.

I thought I would discuss some of the day to day skin and mouth care changes that have occurred due to the treatments.

For skin care, I have two lotions that I need to apply 4-6 times a day to help with the radiation burn, both to treat the minor burn that occurs at the area of treatment as well as help prevent the burns from being worse. While they have a prescription lotion that can be used, the nurse who handles the Radiologist's case load, recommended an over the counter lotion works as well as the prescription and is about $200-300/month less expensive. It is called Medline Remedy with Olivamine Skin Repair Cream and is a great skin cream for anyone who has dry skin, it works very quickly and Stacey is using it on her skin and says it is better than any cream she has used before. The other lotion is pure Aloe Vera gel which also deals with the skin burns and making sure the damage is addressed.

For mouth care, with the production of saliva reduced due to the radiation, I have a simple mouth rinse to keep my mouth clean made from water, salt and baking soda, this is to keep the mouth wet and help the saliva I produce keep the teeth clean. I also have a mouthwash that is a Stanford mix, which helps to keep the bacteria levels in the mouth balanced and prevent Thrush (the white coating that babies get for the same reason-imbalanced mouth bacteria). Then before sleeping, the normal floss/brush routine and followed by a Fluoride rinse and then using the same type of trays you use for whitening your teeth, a Fluoride tray treatment. The Fluoride is used to keep the chance of cavities down. With all the added steps, it is now a 1/2 hour of time from the time I think I am going to bed to actually getting there :)

I had some pictures for today's post, but am having issues uploading, so they will have to wait.

Tuesday 11/17/09

Well it's 6 Chemo and 24 Radiation Treatments left after today.

Today was the long day as it involved radiation this morning which starts at 8:30 and takes about 30 minutes from start to finish with set up and treatment. Today they also took X-rays and did a CT scan (the same machine has attachments for both, so no need to move and get set up again.) Then there was the weekly visit with the Radiologist (Dr. Le) where all of my blood work looked good. There was a drop, as expected, in my red and white blood cell count but all within limits, so no issues there. I am starting to show the Erbitux rash, which is the main side effect that I was told to expect. I am showing the rash on my back, upper chest, top of the head (no hair to hide that :)) and the right side of my face. I am also showing some radiation 'burn' on two of the sites that they are radiating. See mask photo where the X marks the main treatment areas.

As part of this week's exam, I was scoped (see below). This is not as uncomfortable as it appears, or I have just had it done so many times before that I know what to expect and so it does not bother me anymore. The scope goes all the way down to my tongue. Dr. Le commented that, while they had trouble seeing the tumor before we started, it is very obvious to the eye now that radiation has started and on the CT she said she can see that the tumor has started to shrink already!

Since we finished the radiation and Dr. visit by 9:30 and my Chemo was not due to start until 11:00am, Stacey and I took off and went to breakfast at a place called the Creamery over in Stanford Shopping Center (about 10 minutes form the hospital). I surprised Stacey with this as a treat for her and we both enjoyed it tremendously. I might as well enjoy the food while I can still taste it.

We got back in time for me to go and sign in for treatment and Stacey went down for her chair massage. Chemo today was uneventful. It is amazing to me to see how many people Stanford treats in a day. The Infusion unit that I go to has 3 clinics and was running about 1/2 hour late because all of the stations were full. Once I got in the chair, they took my vital signs again, then hydrate with Saline solution drip and, once you are ready, the pharmacy mixes up your drug based on your weight and treatment protocol and then you are ready for the infusion. Funny how a two hour infusion can take 3-4 hours :) The infusion station is made up of the reclining chair, the infusion pump and a guest chair, Stacey got a special guest chair today and managed to get a massage chair today (not to be confused with a chair massage).

Due to the reaction I had last week to the Chemo (severe chills, headache and nausea), I am trying Tylenol and Benadryl this week to try and prevent these symptoms from coming back.

I will leave today with a thought for all, some of you who know me well will remember me saying this, it is something I try to live by; 'If you think you have it bad, take 5 minutes to look around you and I guarantee you will find someone worse off.' This mantra is something that allows me to go through life with a smile on my face and really mean it. I feel that if you take a look at the bigger picture you realize all that you can and should be thankful for.

Monday November 16, 2009

I have heard from many of you over the weekend and this morning about the blog, thanks to everyone out there for their outpouring of love and caring. I appreciate your support.

Well the week started off on the wrong foot, but it turned out OK for Stacey and me. The computers that run the radiation machines were down when we got to Stanford this morning and so we had an extra 2 1/2 hour wait to get treatment. I used that time to go get my blood work done for Chemo tomorrow, rather than have to get it done after radiation tomorrow, using the time wisely :). They test your blood every week before treatment to check on the white blood cell count and to make sure no other measurements are out of whack. Stacey and I also used the time to go get our chair massages while listening to some soothing guitar music from a volunteer, both benefits that are part of the offering at Stanford for patients and caregivers. I was laughing with my brother in law, Tom, yesterday about it being a great resort, with all the amenities, just have to put up with a lot of sick people around you all the time.

It seems Monday is going to be one of the good days as I go through treatment. The chemical is pretty much out of my system (or at least not causing the constant nausea I had last week) and having the weekend off from radiation allows the neck to recover from the potential burning that may occur. My weight is holding (actually gained a pound over the weekend), no mouth sores yet and my skin, while a little tender to the touch, has not really shown any burns yet. My energy level seems ok after having the weekend off, but the real test comes tomorrow with the second chemo session.

Stacey and I went to see BB King perform last night with some of our friends, Bob and Lin, and had a blast, we were in the seventh row and could see his smiles and the twinkle in his eyes. To see someone who is 84 still rip into his guitar as strongly as he does is a truly motivating event. You can't be down while listening to BB sing the blues. The opening act was Willie Nelson's son, Lukas. Now that kid can play a guitar! Sadly, his voice is the same as his father's, :)

Thanks again for all the support and look for an update tomorrow.

The First Week of Treatment 11/10-13/2009

My treatment started on Tuesday November 10, 2009. I was given some idea by the doctors, nurses and techs as to what to expect. I had spent two weeks prior to the start going through additional tests and preparation for the treatment. I needed some medical tests to make sure the side effects from the Chemo was going to be tolerable. The doctor was going to use Cisplatin (the tried and true chemical for throat cancer, having been around since about 1971), which has side effects of possible hearing loss, neuropathy (loss of feeling in the fingers and toes) and severe nausea and vomiting-sounds exciting :) One of the tests I had to take was an auditory exam, which showed I already had quite a bit of hearing loss (thank you Uncle Sam) in the main speech range, so my doctor chose to 'not be the one who causes you to be deaf' and changed my drug to Erbitux, which while slightly less effective than Cisplatin, has the main side effect of causing a rash that can be quite severe and loss of energy. Additionally, I was fitted with a mask to keep my face in the same position for every radiation treatment and 3 small dots were tattooed on my chest to help the techs line me up on the table. The mask starts as a sheet of firm plastic that is soaked in warm water and then fitted to my face. Once it hardens, it retains its shape and is quite firm.

At this point my treatment is to be 30 radiation treatments given 1 time a day every Mon-Fri (and Thanksgiving off) which means I will finish up on December 22nd for this part of the treatment. My Chemo consists of 8 infusions, each Tuesday, so that will finish up on December 29th.

So Tuesday starts with 'labs' where blood is drawn and analyzed to keep track of your status for Chemo. From there it was down to the Radiation Treatment Clinic. They positioned me on the table and placed the mask on me. Then everyone leaves and a big lead door is closed. I am receiving radiation delivered to 7 locations with each location getting two doses per treatment. Each location receives its own level of radiation with the main tumor getting the biggest blast and other areas a little less. After treatment, I met with my Radiologist (Dr. Quynh-Thu Le) and she explained that I will be seeing her on Tuesday's and her resident on Friday's just to monitor my progress. Then it was time to hit the Infusion Treatment Area for Chemo. This consists of sitting in a nice recliner chair, getting comfortable and then getting hydrated with saline solution for about a 1/2 hour, then liquid Benedryl to ease the reaction of the drug and finally, the Erbitux. The Erbitux takes about 2 hours to drain into me and the whole day ended up going significantly longer than expected. We started at 8 and did not finish until 4pm.

I felt fine and we went home and then to a counseling session that Stacey and I are doing to deal with the stress and issues that we anticipate will be a part of our life during treatment.

After that, I went to meet some of the guys I had worked with at one of my old companies, but this proved to be a short night for me. About 8pm, I started to lose all warmth from my hands and feet and start to feel nauseous. When I got home, I had to get a heating pad to get my feet warm.

The next day, Wednesday, I went to radiation at 8:30 as scheduled and then was home and the cold and nausea from the night before was back accompanied by a horrible headache. I ended up putting on an eye shade and taking an ambien and going to sleep from about 10:30 to 5:00 without waking. I still felt ill after waking up, but needed to eat to keep up my weight. I had lost a whole day, it was a weird feeling. I might add at this point, that I am trying to keep working during treatment, but I will not be near as effective as I thought I would be. I am fortunate to work out of the house and have responsibility for sales in the Americas and Asia Pacific regions for a Telecommunications software company (724 Solutions), and have a good boss who is taking my condition into consideration and moving some of the responsibilities to other team mates and handling some of my accounts directly. We currently have open bids at 10 customers (South America, US, Australia, Singapore, China, India, Hong Kong, Indonesia) and all need to be worked on a daily basis, so with the amount of effort needed versus what I can give there is a gap and my team and coworkers are closing this gap.

Wednesday, Thursday and Friday's treatments were a little anticlimactic after Tuesday. Just show up and jump on the table, get zapped and done. In and out in about 20 minutes. On Friday, I did see both my Oncologist and one of the residents working for my Radiologist. Both routine, they like to check on you before the weekend because I won't be in the hospital for two days and they want to check overall condition.

All in all, I did OK this week, I started the week at 213 lbs (after fattening up on doctor's advice) and ended the same, I don't expect this to stay that way, as I am already feeling a lessening of my appetite and the radiation itself burns about 2000 calories per day. It is a dieters dream, being told to eat full fat food and try to eat about 3500 calories a day. Wednesday, the Chemo hit me hard and made me realize that this is going to be harder than I expected. The doctors and techs all say that Head and Neck cancer is the hardest to treat because the radiation causes issues with the mouth and throat and makes it hard to eat and yet you need to eat to keep you health up.

So that was all the technical stuff, what about the head? I have been nervous, but not scared coming into the treatment. The night before I started, I was just sitting and thinking and realized that things in my life will change after Tuesday the 10th. I pray that it will mean the end of the cancer in my body, but it also means a lot of changes in the physical make up of my body due to the chemicals and radiation. I feel a little melancholy over this but not a bad sadness, just a realization that life happens and the road we travel does have some pretty good curves waiting for us. I have struggled to call all the people back who have reached out to me, it is just hard to explain everything to so many people, one at a time and actually, a little depressing, in that, by having to continually explain it, I get stuck in the treatment for more time than it actually takes to receive the treatments.

I plan to make this a daily blog starting on Monday November 16th.

Thanks again for all of you out there that care and are praying for me.

I did visit with family last week and my daughter, Erika, and niece, Jamie, went out and got me an ice cream cake that said 'Cancer Schmancer' in the best Fran Dressler-The Nanny style, see below to see how beautiful both girls are and my cake :)

The Beginning

I'm a 60 male who was diagnosed two years ago with Metastatic Squamous Cell Cancer (Throat Cancer that had moved from a primary site to a lymph gland.) The bout of cancer had presented as a swollen lymph gland that showed as non-cancerous after a FNA (fine needle aspiration.) After removal, a biopsy showed that the lymph gland did, in fact, contain cancer from my throat, but there was no primary site found at the time. The local doctors in Los Gatos wanted to get me into Radiation and Chemo right away, but my personal doctor got my case reviewed at Stanford and they wanted to retest everything up there. So I went through more exams, Pet Scans, MRIs....... a lot of tests. They could not find a primary site either and the treatment recommended at Stanford Hospital was to do a radical neck dissection to remove additional lymph glands (64 in total) all of which were tested and were negative for cancer. This was followed by exams every 6 weeks and a Pet every 6 months to make sure there was no activity.

It had been a little over 2 years from the time I had first felt that lump on my throat and, while in China on business, I was rubbing the back of my neck and felt a lump on the back left side of my neck. Upon arrival home, I was back up at Stanford within 2 days and the diagnosis was Metastatic Squamous Cell again. Following a Pet Scan, no primary was found again, so we did another neck dissection, this time for 10 lymph glands. During that operation, they also checked my lungs, throat, larynx and tongue and found a spot of cancer on the base of my tongue. It had not shown up on the PET Scan because it is not a particularly active tumor and the tongue shows as active on the Pet. They ended up having to do contrast to find the tumor, but find it they did. I have been put on a treatment schedule that will include 30 sessions of radiation aimed at my neck and tongue and chemo to aid with the effectiveness of the radiation and kill off any random cancer cells traveling around my body.

I am very fortunate to have a wonderful wife who is acting as my caregiver, a family who is checking in with me all the time, friends who are there for me and a lot of acquaintances who are praying for me. All in all a lucky guy who has hit a bump in the road and and I hope to use this blog to let everyone know what I am going through in treatment of this tumor and to rid myself of the cancer. It is very difficult to talk to everyone about what is going on with the treatment and how I feel. I cannot find the time to return all the calls I am getting, but please know that they are appreciated and the calls are one of the main reason to write this blog to allow everyone who cares to stay abreast of my journey.