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.