Great News - Update 2/24/2010

Great news, I had my baseline MRI on Monday and the doctor's assistant just called to tell me that the scan looked good, meaning the tumor is gone from the base of my tongue. Suddenly, all the pain I went through is a mere memory!

I am bursting with energy from that phone call. The feeling is so much better than the others where the doctors ask you to come in for an appointment so they can tell you they found a tumor, getting the clearance by phone is just fine.

Overall, I am very much on the mend. I have lost a total of 47 pounds since the start of treatment and weigh in at a skinny 166. I plan on leveling off at a weight under 190, which will help me overall (and kick start the economy with the cost to alter all my suits and pants.)

I am still having pain on the side of my tongue and back of my throat that result in eating issues, because the sores have not fully healed, but it seems that as each day (literally) goes by the pain is less and I can eat more. I had a massage last week and it released some of the chemo that must have been stored in my cells because I had several bouts of vomiting, some skin dryness and breakouts. Overall my skin has healed and it looks good, not the 'new skin' pink you normally see after a burn, it is actually a little tanned from the depth of the radiation burn. I am also still having trouble with my nose running constantly from the remnants of the chemo, but that is tolerable and kept in check somewhat by Benadryl. Eating requires a sip of liquid with every bite of food and I still can't eat most solid foods yet (bread is like cement in my mouth and so I have omitted that from my diet,) and my taste buds are still not there yet. I can't taste sweet, only salt and bitter. When I eat, most of the flavor comes from memory and when my tasted buds tell my brain what I am eating, I get conflicting messages and sometimes it makes certain foods inedible.

I have now gotten into a routine that includes ensuring to use skin cream to keep my new skin moisturized twice a day and getting ready for bed includes rinsing my mouth with the salt water and baking soda mix, using trays for my teeth filled with Fluoride (protect my teeth because I still do not produce any quantity of saliva), filling the humidifier with water (to aid in overnight dry mouth), getting the heating pad going (I still am so skinny, I am constantly cold), taking pain meds and Benadryl and finally getting into bed.

I will have a PET scan in the next 4-6 weeks to get a cellular look at my head and neck and ensure not other hot spots exist, but it looks like we are onto counting the time of being 'Cancer Free" begins now!

Feb 6th Update

Hi everyone, it has been a while since my last update and things have gotten better quickly. On my last visit to the doctor 2 weeks ago, she came in, looked at me, and immediately went to the computer to look at my chart. She had reviewed my chart and wanted to double check to see when I had finished training. She could not believe that it had only been a month ago that I had finished treatment. She commented that I had done amazingly well and that I had tolerated the treatment better than most.

My neck is almost fully healed and it is amazing to see how nicely my operation scars have healed. I still have a large sore on the side of my tongue that hurts when I chew or talk, so by the end of the day it is usually raw. That has not stopped me from moving back to soft foods and off the liquid diet. At my lowest weight I had lost 40 lbs from 213 down to 173. I have now started to recover the weight and have gained a pound this week. The other issue is that swallowing still hurts, but I an certainly tell the difference of a few weeks, that is easing as well. Everything else about the recovery is going fine as well. My skin is healing from the Erbetux rash from the Chemo, but is still very dry, so I am working on that. The other two remaining symptoms are being cold all of time and my nose still runs due to the allergy to the chemo. Both of those should ease up in the next month or so.

I started traveling again for work, last week I was in Jakarta, Indonesia and this week I am off to Delhi, India. Talk to you all soon

Well I am way behind on an update but wanted to have some pictures to show as well.

I am two weeks removed from treatment and am down about 33 lbs from the start of treatment. I have dropped a lot of the weight in the last few weeks as it has been a real chore trying to get enough calories in me to prevent the loss. The picture above was taken on Monday Jan 11th, so it shows the current me. The picture below was me on Christmas Eve, before shaving the Mutton Chops off.

I had to shave as the radiation caused my beard to fall out on the upper chin and lower cheeks and looked weird. You can see the hair loss a little better on the next picture.

This is a picture of my daughter (Erika) who came home for a few days around Christmas.

We had a great time and did the carriage rides in our town just before Christmas. The people shown are some of our close friends that we have been able to see during my treatment and share a lot of laughs and fun. The second picture is of my daughter and wife (Stacey) after the carriage ride.

So enough about what we did, here is my current status. As mentioned above, I finished my last chemo two weeks ago and radiation the week before that, so I am done with treatment, but the treatment is not done with me. My skin is healing nicely, although I have an area which is a worse than the rest as it received a major blast of radiation and was where they had removed 10 lymph glands in an operation at the end of September and was still healing when I started treatment.

As you can see from above, I still have very raw skin on the left side of my neck and have to treat that with Domeboro solution twice a day and special skin cream several times a day as well. My tongue is down to only 1 sore, but it is a big one, the entire left side of my tongue is one large sore. Additionally, it hurts like heck to swallow. The pain of swallowing is helped by the pain meds I am still taking, but the tongue and neck hurt irrespective of the pain meds.

I can see the daily improvement, but it is not as fast as I would like and the lack of eating is disconcerting, but I am able to eat soft foods now and should getting some weight back on soon.

The post operative MRI and PET Scans will start in about 2-3 months so we should see that the cancer is gone and I start counting on duration of being cancer free.

Here is a picture of some of the folks helping with the care and feeding of Rich :) We have some other friends that are providing some great food as well, keep it coming folks along with the smiles. Note the glass of water for Rich....no wine yet.

Look for an update next week at this time.

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.