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.