My New Blog

I have created a new blog: "My Butter on Bread".



Since the boys are dead and gone I thought it only appropriate to move onto a new phase and a new blog. Feel free to come on over to the new blog and say hi!

Wednesday, June 27, 2007

I am very pleased to announce the confirmation of the death of Bill and Earl!

I had my PET/CT scan on Monday, June 25th and received the results yesterday and final confirmation from the doc today. We have been nervous, anxious, excited, and just about any other emotion over the past few weeks, that has grown daily until we got the results back. Even though we were confident that they were gone we need the reassurance from the scan that they truly were gone. What a relief! We can now say that I am in remission! Here is the crazy part, on December 26, 2006 I got the call that I had two malignancies in my neck - exactly 6 months later on June 26, 2007 we got the news that I am cancer free!

Since I last posted I have continued to work full time and started to live life with more normalcy. I have finished my physical therapy and now do strengthening exercises at home. My strength is at about 95%, my taste is at 99%, and my saliva is only about 60%. The hair I lost on the back of my head from the radiation has started to grow back; the hair that I lost on the top of my head before the cancer still is gone and hasn't come back! My neck has healed up very well and looks like a nice sun tan at this point. I still don't have whiskers in that area...hopefully it will stay that way! I really do feel really good! We have done more geocaching, most of them with a hike.

Today we were talking about getting back to a normal life but we have decided that it is not getting back to normal it is starting a new life after cancer. Many things change when you go through this experience that affect your thoughts and actions. I am including in this post the lyrics from Toby Keith's song "My List". It has some really good thoughts that we should all think and do something about. I really appreciate the time that I am spending with my family - not that I didn't before but it now has a much greater meaning to it.

"My List" - Toby Keith

Under an old brass paperweight
is my list of things to do today
Go to the bank and the hardware store,
put a new lock on the cellar door
I cross 'em off as I get 'em done
but when the sun is set
There's still more than a few things left
I haven't got to yet

Go for a walk, say a little prayer
Take a deep breath of mountain air
Put on my glove and play some catch
It's time that I make time for that
Wade the shore and cast a line
Look up a long lost friend of mine
Sit on the porch and give my girl a kiss
Start livin', that's the next thing on my list

Wouldn't change the course of fate
but cuttin' the grass just had to wait
'Cause I've got more important things
like pushin' my kid on the backyard swing
I won't break my back for a million bucks
I can't take to my grave
So why put off for tomorrow
what I could get done today

Like go for a walk, say a little prayer
Take a deep breath of mountain air
Put on my glove and play some catch
It's time that I make time for that
Wade the shore and cast a line
Look up a long lost friend of mine
Sit on the porch and give my girl a kiss
Start livin', that's the next thing on my list

Raise a little hell, laugh 'til it hurts
Put an extra five in the plate at church
Call up my folks just to chat
It's time that I make time for that
Stay up late, then oversleep
Show her what she means to me
Catch up on all the things I've always missed
Just start livin', that's the next thing on my list
Under an old brass paperweight
Is my list of things to do today

Wednesday, June 6, 2006

It's been busy having company here; not much time to post. I've been going to PT the last couple of weeks and still have some more to do until the neck gets back into shape. We're getting there with exercises, stretching and massage. It is getting a bit better every day.j

I scheduled my PET scan today! On Monday June 25th at 11:00 AM! 19 days and counting! The only bad thing is that I can't have anything to eat or drink (only water) for 6 hours before. I've gotten used to having my breakfast and a can of V-8 in the morning. Oh well! At 11 I'll get my cup of barium! Andrea can't even drink the barium - I didn't think it was too bad. I have my results appointment set up for Wednesday June 27th at 2:00 PM. I am going to have to keep really busy that day or the time will go so slow! In my head I am really confident that the boys are dead and gone; I have a great deal of faith in Lord, all the prayers everyone has given for me, the work of the excellent doctors and nurses and my bodies ability to heal. But still...it is a bit scary!

I am amazed daily how well that I am doing. I have to admit that I am not a full 100% in energy and stamina but, conservatively I can say I am 95% there. That 5% is more of the muscle that I lost during treatment. I will be back in shape before too long...fencing lessons will start in September and I don't want to look too bad! The taste gets a little bit more everyday and I am enjoying more and more tastes and flavors every day. The saliva is still dragging behind; it's better than it was and continues to get better it is just moving slower than everything else. It will get there!

Thursday, May 31, 2007

I haven't posted for a week due to being busy as all get out! We have some family here from Germany and have been entertaining and visiting with them. It has been a very busy week for me and the family. Last Friday (May 25th) our daughter graduated from high school. We had a get together for family and friends that evening to celebrate not only Jessica's success in completing high school but also a celebration of my success in completing my treatments. As always Andrea did an amazing job and I got to see some folks that I haven't seen in quite awhile.

Over the long weekend we stayed busy as well...maybe too busy! I feel so good that I forget what we have gone through over the last few months! On Sunday we drove down to Cripple Creek just to do some sight seeing and get out of town. We took the train ride on the Cripple Creek/Victor railway and sucked in some coal smoke. It was a short ride but interesting and enjoyable. We then walked around town for awhile, window shopping and going through the antique and curio shops. We stopped by one of the casinos that we had gambled at in the past as they have pizza there for $1.00 a slice (and the pizza is pretty good!). On Monday we went to the zoo and walked around looking at the animals for about 5 hours. It was a hot day and we really had to tank the water and keep the sun screen up. By time we got to the end of the sights I was feeling my stamina fade away. Duh! Not real bright sometimes! I don't suppose I can blame this one on chemo brain! We got home and ate some dinner and I didn't make it much past 8:00 before crashing out for the evening. In hind sight, I am a bit amazed that I was able to do as much as I did!

I was at PT on Tuesday for my neck...it got nuked pretty good through treatment! The muscles are really tight at the base of the skull and along the trapezoids. I got the neck massaged and received some exercises to do to keep it loose and happy. I'll go back for the second time today and two more times next week. I think I am going to be ready for a full body massage by next week!

Time to get off to work again. We have a lot going on so it is really busy mentally for me. That is a good thing and helps me really get back into the swing of normal life.

Thursday, May 24, 2007

First week of full days back at work! I am actually surprised by my stamina, I am really not wiped out. I guess it's not a full week since I won't be going to work tomorrow since it is Jessica's graduation. I have been meaning to post all week but when your on the computer all day the last thing you want to do at night is be on the computer! It has been a busy week all in all though for this house. The German relatives arrived on Tuesday night with their new baby; it's really great to have them here for awhile and spend time with us.

Wednesday we went to see the radiology oncologist for a check up. He gave me the all is good, can't feel anything in the neck, and I can't believe how well you are doing! Even though we have faith that all is well and the boys are gone, there is still a bit of anxiety and relief when they tell you all is fine. Later in the afternoon I had to go see the dentist for my first checkup since my treatments ended. He took xrays and did an exam. I have a filling that needs to be replaced and another tooth that looks like it is starting to decay. The doc said normally he would just say lets keep an eye on it but due to my radiation treatments he want to be agressive and fill it right away. Go figure, I don't go to the dentist for 14 years and have only one cavity and then get radiated and 5 months later I have two starting! They did trim back my floride trays so I don't gage on them and can use them! I am thinking my gag reflex will be ultra sensitive the rest of my life now after all of this! I go back to the dentist in mid June and the radiology oncologist in mid July.

I joined a yahoo group for folks with Head and Neck Cancer this week. There are quite a few people like me in the group. Some who are further along, some about the same stage, and some who are just starting. I am hoping to help anyone I can in any way even if it is just a supportive word or two. Having been (or should I say am still) there, we all can use an extra prayer or two to help us get through it.

Sunday, May 20, 2007

I am still suffering from some cabin fever, probably from working from home in the afternoon last week. So, we decided to put the honeydo list aside today and go geocaching. We plotted our course, printed out the caches we wanted to do and headed out after we ate brunch. With all the moisture this spring the mountains are beautiful; the rivers are running pretty high and heavy but it is really beautiful up there right now. Everything is green and fresh and we even got rained on - it smelled really good! We completed 5 caches today and would have done more but we spent over an hour hunting for one cache that we could not find - we even had another family hunting with us! We all finally gave up and left! Another one we skipped was across the creek (which is running pretty high) and it started to rain (hard!)...really didn't need to get soaked or run from rising water or a flash flood.

It is nice to stop and smell the roses...even if you have hay fever. The things you take for granted! We really had a wonder day just the two of us and mother nature.

Saturday, May 19, 2007

Wow! Over a week since I last posted. I started back to work this past week and it has been a very busy week. Once I get settled back into the workplace I will be able to post more often. It was nice to be back at work, another big piece of normalcy. It does help to get back into the swing of things. A lot has changed in the 3 months I was out and getting caught back up on the status of things and the things that have changed provides a good mental work out which I truly do enjoy. Andrea wasn't to sure about this, she has been taking care of me and we have done practically everything together for a good while.

I have had some other firsts this past week that are definitely worth mentioning. Last Sunday I had my first beer since January this year! It wasn't up to full taste but it was pretty damn good! I eat more and try more things to eat every day. I had my first Chipolte this week, a barbacoa burrito bowl - the mouth is like a baby right now as it lit me on fire! Before cancer treatment I didn't think it was spicy at all! I also had some chicken this week as well. For those of you who know my eating preferences, this is quite a shock as I have sworn off chicken for many, many years. My Mom made it in a chili sort of crock pot dish and since I said that I would try some things that I haven't liked in the past - being a survivor changes you thoughts on a lot of things - so...much to my Mom's and Andrea's delight I ate chicken. It was actually really good.

During the dark times of treatment that I don't remember too much, my Son had ordered me a Livestrong book from the Lance Armstrong Foundation. I barely remember looking at it then and have this week picked it back up and looked through it. There is a lot of good information in there touching on just about everything from first learning that you have cancer, treatment and post treatment. There are forms to fill out to help you track what you have done and where you have been and a large amount of good information for surviving the process.

Last Wednesday was Livestong Day and we had plans to attend a vigil down at the capitol building in the evening. Unfortunately, after not getting much sleep the night before because of a sick dog and needing to get used to the work day again, I was to damn tired for us to go do a lot of walking and standing. Next year I will be in much better shape for attending those type of functions. The Livestrong organization is an excellent resource for cancer survivors, their care givers, family, and friends to find information, help, and hope in the fight against cancer.

Friday, May 11, 2007

When things happen slowly over time sometimes it is difficult to know that they have changed. Watching your kids grow or gaining/loosing weight happens slowly over time and when you live with it every day it is changing but hard to see as you are there all the time. My saliva production has gone that way as well. It has been hard to notice a change over the last few weeks but it has improved; it's not 100% back yet but it has changed significantly. I found this out yesterday when Andrea gave me a slice of her pizza that they were eating for lunch. I was able to eat it (except the thick crust) without needing a drink after each bite! Wow! We got to talking about bread and buns and Andrea thought that I would be fine with it; I wasn't so sure - back to the things that change over time and you don't see it. We decided we would give it a try with McDonald's for dinner. For those of you who know me well you know that hamburgers are one of my favorite foods! So for dinner I had a Big and Tasty and French Fries. Wow! Another step towards being back to normal! I was able to eat dinner without having to drink after each bite; I guess the saliva is coming back!

We did some clean up in the garage yesterday - things I've been wanting to do for months! We didn't over do it and stopped early before we got out of control. I do feel the laying around for a couple of months this morning as I have some sore muscles. Man am I out of shape!!! It is a good kind of sore as I know I am working on getting my strength back up again. All part of the healing!

The healing continues very well. The burns on the neck are all but gone now (I do have a heck of a tan on my neck though!), most of the zits are gone, the whiskers (what I have left) are growing faster, the saliva and taste buds are coming back, and my stamina gets better every day. Before you know it all be as good as new!

Wednesday, May 9, 2007

We headed out this morning to the radiology oncologist first, no appointment just to visit. It was nice to see everyone again and to show them my recovery status. Everyone was surprised to see how far along I have come in the healing process. These people are the angels who helped me and Andrea (my personal angel) to make it through the process. It is strange to go there for a visit and not any of the multitude of other things that I went there for.

Next we went to the office to see everyone and speak with the boss about my return to work. I have to say the company has been really great and supportive throughout this process and my boss has been great in working with me. I am going to return to work next Monday! The doc's feel I am good to go and I am ready for the normalcy of returning to the work place. We are in a transition mode in my department and the work load is heavy but my staff has done a great job in my absence.

This afternoon I join the Livestrong Army to help support and work in the cancer community. I hope to help do some work within the community to help out others as they take the journey that I have been on.

Tuesday, May 8, 2007

We went to see the oncologist this morning who was impressed how well I was doing and that I was ahead of the "normal person" in my recovery. Everything looked good and I have gained weight. After talking about that he asked me if I wanted to get the feeding tube out...well yes! So I have the OK from him! He has changed how long to from the 8 we thought to 10 to 12 weeks post radiation completion; so...we are looking at the end of June now for the PET/CT scan. It's rough to have to wait so long but he feels more comfortable with that and that even at 8 weeks we could get a false positive. We discussed recurrence and what to do to help prevent it...a lot of vegetables and fruits. We also talked about the frequency of testing and what type; he wants a PET/CT every three months for the first year...that works for me! It will be 5 years of no cancer before we can officially say I am cured.

After we left RMCC we headed downstairs to get some blood taken and then went back up one floor to the gastro's office to schedule the removal of the feeding tube. We had to wait a little while as she was with a patient but it was worth the wait, when she was done she told the receptionist to have me fill out paperwork and that she would remove it today! So we did the paperwork and hung out until our turn. She had me lay down on the table and told me it would be a quick sharp sting and that was all; she had me take a deep breath, let it out and she just pull it out real quick...it made a pop when it came out! That simple! Talk about some normalcy, I have had that tube hanging out my stomach since January, it is so nice to have it out! It was really nice to give Andrea a good hug without that tube being in the way.

Tomorrow we are going to go stop by the Littleton RMCC to see the folks there and then stop by the office to see the gang and talk to the boss about returning to work.

Monday, May 7, 2007

Last night there was a special on Discovery channel called Living With Cancer. If you didn't get a chance to see the show I highly recommend it. They are doing a rebroadcast of it tonight at 6:00 PM Mountain time (last nights show was live). I'm not a big Ted Kopple fan but he did a good job with this. He did a documentary on Lance Armstrong and his best friend. The Lance story is fairly well known and the part I found most interesting was his interviews with his best friend. He was very open and really laid it out there; feelings, thoughts, the whole thing. The only thing that they do not really touch on or get into is the caregivers of cancer patients. Well worth a look.

Tomorrow is another appointment with the oncologist, just a checkup as the healing continues. We will proably discuss and schedule the PET/CT scan. That is our next big milestone in the journey. It will be around 4 1/2 weeks from now or 8 weeks post the last radiation/chemo.

Going back to work is getting closer and closer. This will also be discussed tomorrow with the doctor and then I'll make a decision on when I can go back. More normalcy! That is a good thing!

Friday, May 4, 2007

Good News!

Went to the ENT today and he checked me out and scoped me with the fiber optics to look for Bill. Bill, like Earl, is no longer visible!!! The base of the tongue where Bill was hanging out at is looking good and normal. Thank God!!! In your mind you know that what they have done will have killed both cancer locations and that they are gone but to have the doc look down there and just verify that they are gone is a huge relief. Now we play the waiting game again for the PET/CT scan in 5 weeks. It will probably be difficult as the time gets closer but right now it is still far enough out that there is no anxiety at this point.

Food wise still doing good. It is a challenge at times to come up with meals; as I need as many calories, good or bad, that I can get to maintain weight or gain. The list of things I want to eat is a mile long, unfortunately most of them are to dry for me to eat yet. A friend of mine asked if I could eat peanut butter; I wish I could but at this point it is too dry, even with the natural oils in it. Bread is really not an option at this point either. Andrea made me french dip for lunch yesterday and I really have to soak the bread to get it to go down without a drink. My tongue is still in the healing stages as well and today is the first day in over a month that I don't have a sore on it! I do baking soda and salt water rinses numerous times a day to keep the pH balance in my mouth neutral which has helped it to heal. Even though I don't have a sore on the tongue it is still red and sensitive to the good things I like to eat! Ranch salad dressing last night on my salad got to burning a bit - go figure salad dressing! It must be the pepper or the garlic??? I love spicy foods, salsa goes great on just about anything...I can't wait to be able to eat like that again! The Brewery Bar's hot green would probably having me crying like a baby at this point!

Once again thanks to everyone out there for their thoughts and prayers.

Thursday, May 3, 2007

Tomorrow is a milestone day for us with the ENT looking down the throat to see if Bill is still hanging around. I have to admit that I am a bit nervous about this one. I feel that he's gone since Earl is gone but still it has a tendency to scare the crap out of me if I think about it to much. Thank God for Andrea! She has help to keep me busy and my mind off of things that I don't need to be thinking about too much.

I think I may have gained a little bit back on both saliva and taste; hopefully it's not just wishful thinking! I continue to eat and try new things. The weight is hanging in there and I am gaining a little bit. Those of you who know me know that gaining it is not an easy task for me to do! Andrea keeps track of my intake and helps me to make sure I am getting enough calories at my meals.

Everything is progressing a little bit more every day. I am even surprise to see the changes and the healing that is going on. My neck gets a little lighter, my taste and saliva grow a little more, my strength is even coming back faster than I thought it would. Before you know it I'll be keeping up with the kids again! I am looking forward to that.

Tuesday, May 1, 2007

Over the last week I have been dealing with a rash? or outbreak? hard to describe in a single word. They look like a mix between a bite and a zit...if you've ever had them, closer to chiggers but bigger. They were all over my body with my legs and stomach getting the worst of it but I even had them in the palms of my hands. They burned and itched and were about to drive me insane. Called the doc and he prescribed a gel for me to put on them topically; we had already tried everything we had in prescribed and over the counter topicals on them and nothing help to heal them or stop the burning and itching. Ended up getting an appointment with the doc to look at them and see what was going on. He wasn't sure what it was, a lasting post reaction to the steroids or herpes or some other things I don't remember! He prescribed tetracycline and valtrex for me to take and thankfully it has stopped the outbreak and is healing the bumps. Thank God!

I have been eating for a full week now and am maintaining my weight which is what I need to do to get the tube out and return back to work. I can't taste everything all the way yet; most things only at about 40% of what I remember them to be. I also don't have my full saliva back yet either; so bread and other dry things are very difficult at this point. I do have some saliva as I don't need to carry a water bottle to keep my mouth moist or have to take a sip to swallow my food (except really dry foods). It seems that I am getting a little bit more taste and saliva over the past week. It is just a matter of time to get them both back.

My burns (on the neck) are healing very well and quickly. They are no longer the angry red color but have faded to a lighter red and the new skin has come in. I was able to wear a normal T-shirt yesterday for the first time since the radiation therapy cause the burns on my neck back in February! It felt strange to have something touching my neck but it was nice to have some normalcy again. We are only having to put burn cream on my neck twice a day. My throat has healed from the burn and is pain free at this point.

We had an appointment with the radiation doc last week and he felt I was doing very well. He did feel my neck to see if he could feel Earl (I have done this as well as the neck could tolerate it) and neither one of us could find it! I have an appointment with the ENT this Friday and he will look down my throat with the fiber optics to take a look for Bill. Hopefully he will not see any sign of him. Earl was the larger of the two masses and he is gone so Bill should be gone as well.

Tuesday, April 24, 2007

I have really been working on the eating; or as a friend puts it - chewing my soup! Sunday night I did eat my meal of noodles and gravy and also had some salad with ranch dressing! It was nice to get my belly full and not hear the sound of a blender!

Monday morning I got up and made my normal through the tube breakfast of cream of wheat and a cup of apple sauce, but instead of mixing it all together I sat down and ate it with a spoon! Making progress! Once my taste buds come back more it will even be easier!

Lunch was a different story yesterday though. It seemed that no matter what I ate I could not taste. This sucks in ways I cannot even begin to describe. Andrea had made tuna salad and I tried a sandwich even knowing it would be dry but it had zero taste - frustrating. So then I tried a slice of bologna with cheese dipped in ranch (that I tasted before) and still no taste...gave it to the dogs! Gave in and blended up some stew through the tube; major bummer.

Dinner went better for me again as Andrea made a pot roast with potatoes and carrots. Mmmm, mmmm good! Thank God it had some flavor so I was able to eat! Had a bit of everything and it went very well, except I forgot to save room for dessert! I was stuffed!

This morning we had pancakes, scrambled eggs, and bacon. A bit on the dry side so I had to wash it down with my juice but got another meal in down the neck and not the tube.

My neck is getting better every day. Not sure how long it will be before I can put a tie on again but I am hoping for being able to at least have a collared shirt on in a couple of weeks. My throat is doing really good at this point allowing for most all foods to pass without any pain. I am taking all my meds via the mouth at this point as well. Still routing for the taste buds and saliva to jump into the game with the rest of us - though I have heard I can taste more than most can at this point!

Every day is another day closer back to normalcy.

Sunday, April 22, 2007

Two days in a row! Amazing!

We have been experimenting with foods and drinks the past couple of days, see what my taste level is like. Most of the things I have tried are about 40% to 50% of what I remember them to be, so not to bad. I tried some coffee yesterday evening...man has it been a long time! The coffee is about 70% taste wise and was really enjoyable! I limited it to half a cup as the Erbitux still has me a bit on the dry side and we are doing liquids orally at this point. We came up with a cup of water for every half cup of coffee. Sure beats another needle stick at this point!

I have been trying little bites of things like Salisbury Steak, whip cream, banana, what ever may be out. The soft things go down a lot easier than things I have to chew up real good; the throat is still a bit on the sore side. I did eat some scrambled eggs this morning, three bites, not a full breakfast but its a start. They are a bit dry at this point until I start making more saliva. I tried some orange juice - tasted real good - but still have a mucositous sore on the tongue that didn't really appreciate the citrus acid!

Been trying to get out more as the cabin is still closing in! Yesterday went to my buddies house for his son's 21st birthday party. It was nice to get out and see non-medical people. Today we went to see the folks for awhile and have a cup of coffee (drinking my water while I blog!). Andrea just gave me a spoon of tapioca pudding, it is amazing, this is the one item that I never lost the taste of while I went through all of this...it still tastes the same as it did before we ever started.

Tonight I am sitting at the dinner table with the family to eat dinner for the first time in months. Noodles and gravy should go down fairly smoothly and I can taste the gravy as I have already tried. We'll see how it goes and I'll post it in the blog tomorrow. Dinner is almost ready so that's it for today.

Saturday, April 21, 2007

Well it's been a couple of days since I blogged. Not doing so good at frequency of the posts!

Healing continues on a daily basis and I have been trying to get out a bit more. Only did fluids 3 days this past week and we do not have anything scheduled for the weekend or next week. I am keeping hydrated well enough at this point to avoid more needle pokes. Andrea and I went to the office this past week for a little bit; it was really nice to see everyone again! Even though I am getting out more it doesn't take too long before I am wiped out. Not much endurance at this point; I think the body is sending the message to take it easy and let if focus on the healing.

The throat and mouth are getting better every day. The throat is still a bit sore but liquids are going down fine. The mouth sores are down to only one left this morning. My neck still has a pretty good burn spot going on the left side but when Andrea is cleaning it she is seeing a lot of new skin growing so it is healing. None of it is as fast as I would like but I can be a bit impatient!

Last night we decided to try some food via the mouth. We went with vanilla ice cream to take it easy on the throat. I was actually able to taste the vanilla ice cream and put some chocolate syrup on it because I can taste it too! This was the first time in a very long time that I have eaten like a normal person! It was great! The best is that I could taste what I was eating; not a full taste like before but the flavor was there. I guess my taste buds didn't get to destroyed in the process of radiation. I'll be trying more foods as the days go by.

Once I am back on a full diet through the mouth and maintaining my weight I can get rid of the feeding tube! I can't wait!

Tuesday, April 17, 2007

Healing is the word at this point. They did say that some things would get worse before things got better...it was true! Both the chemo and radiation are cumulative and continue functioning even after the administration of either has been done. So...I still have zits (they seem to be coming in more now than before!!!) and I have a couple of really good burns going on the neck due to the last 10 radiations, as they were focused down tighter onto Bill and Earl than the first 28.

Based upon past time lines, e.g. when I had to break and we saw how that went, we are hoping that by this weekend we should start to see more positive improvement to normalcy. In the head when the treatments stop you really expect to see things improving over night right!?!?!? Maybe just me! Maybe I want to be done with all this and back to normal so bad I can't stand it! Or just an impatient old man!

At this point my tongue is still giving me hell and since Saturday the throat started to hurt. Once we can get past these two minor items I am hopeful to start eating again through my mouth! Even if I can't taste much at this point it will be a good thing...hopefully next week.

Let's talk cabin fever. Since I went on leave from work I have seen the inside of our house, the inside of two RMCC locations and one other doctors office. As these were the only places we went I know every blade of grass and every tree - I was on vicodine so they may be a bit fuzzy!!! But that was it! Kind of like watching reruns of Welcome Back Kotter! So.....last Sunday we got up and I was feeling really good (we are trying to get away from some of the multitude of drugs as well- so I am using Advil for pain instead of the heavy stuff!) Anyway, I was feeling really good, the weather was good, and we - Andrea has been stuck looking at most of these walls as well - so we loaded up the Saturn and went for a Sunday afternoon drive!!! You have know idea how nice that was for both of us! I have to be really careful in the sun now so we pretty much kept to the car but Red Rocks was as gorgeous as ever! It was really a nice break!

As the healing continues I will try to be a bit more diligent in getting my blog updated. I have an appointment with the oncologist this morning - just a check up and then we'll figure out whatever.

Have a good day and enjoy the little things....didn't the air smell great this morning after the rain last night? I know it did to me.

Thursday, April 12, 2007

Another major milestone day! Last round of radiation therapy done! That was number 38! All done with both sides of therapy now - what a relief! It has been a rough road to go down through this battle and the strength of the support from my friends, co-workers, and most importantly my incredible family have helped me get through it. Andrea has been my rock throughout this entire thing and really has kept me on track and pushing on even when the pushing was tough.

Now what to do? Heal, heal, heal!!! Oh and the multitude of doctors follow ups and tests as we go. I am ready on the healing part though. I am ready to get back to eating food through my mouth instead of a tube, drinking a cold one, and getting back to normalcy and the daily grind! Oh, how I miss the grind!

We had a little party if you will after my RT today; Andrea baked a cake and brought it in with thank you written on it for the staff at Littleton. They are a great bunch of people there who help support not only me but provided a lot of support for Andrea as well. It was a great celebration and fun with those folks.

Tomorrow is the first day without anything like chemo or RT...I'm not sure we are going to know how to act! I will continue to get IV fluids on a daily basis for a couple of weeks until my fluid and food intake is coming more through the mouth but that is no big thing; no stress related to it.

Wednesday, April 11, 2007

Milestone day! Final chemo was done today! No more Erbitux for this guy! I spoke with the doc and we actually only did a half dose for the final. It seems like so very long ago that I got my first dose and now I am done. I'll still have to deal with the affects for awhile long but after this long I guess it is a small price to pay.

Later this afternoon is my next to last radiation therapy and tomorrow will be the last of that as well. Big stars on the calendar this week.

Now we just have to do all the scheduling and setting up of follow up appointments with the various docs and of course heal!

WOW! What a day!!!

Tuesday, April 10, 2007

Well we got the RT done yesterday as on schedule and this morning had another one down! I am now down to 2 more treatments on that end! What a relief! We had to work pretty hard to get past some issues that I was having dealing with the bite block and had to improvise a lot but now we have it down to a science (always at the end!). After the physical part of the treatment is over the radiation continues for awhile working on the inside but the outside can begin to heal. After the first 28 treatments the burn field was narrowed down considerably for these last ten shots so I am already seeing a lot of healing happening where there is no more in line contact.

Still on a considerable among of drugs from nausea, saliva, mucous, anti anxiety, anti depressant, pain meds, and who knows what else. I am looking forward to getting all this stuff out of the system and returning to normalcy once again.

Tomorrow is my next visit to the oncologist office so I many not post until late or wait until Thursday so I can explain the visit. We are on the run constantly it seems between different doctors, treatments, or locations as I get IV fluids 7 days a week. (arms are like bald, bruised, pin cushions!); and I still have to have down time to heal while its all going on. So hang in there gang, the worst is over and I'll post when I can.

Monday, April 9, 2007

Good morning, friends, family, and readers of my blog. First things first a very special thanks to my dad for helping me out with my blog during some pretty rough times. I guess this wasn't a much of a "walk in the park" that I was hoping for! But must importantly I'm back and still amongst the world or my part of it.

I won't try to fill in all the blanks during the "dark ages" of the past few weeks as I would much rather be looking positively forward at this point. I did had chemo last Wednesday, which I do have to say sucks and is getting really old. Not sure at this point if another will happen this week or not; the decision will be made later this week.

The biggest news is that I have only 4 more radiation treatments counting my one today! Yahoo!!!! That is a wonderful thing and then the healing can truly start. My neck is pretty burnt and it looks like I feel asleep on the sun and forgot to cover my neck from collar bones to the jaw line. It has cut down on the shaving though since my beard bearly grows where the radiation has been!

All is doing well and progressing positively at this point. I once again thank all of you for your thoughts prayers and concerns during my adventure. It means more than you will ever know.

To KLF, TVP, and TW thanks for the basket...it definitely brightened my day.

To the company thank you for the flowers they are beautiful and not only brightened my day but our Easter as well.

To KC and Sunshine Jane...thanks for the pics. It's good to see the gang again.

I'll attempt to start to writing every day again. Thanks,

Steve

April 1, 2007

Steve's dad reporting again. And yes, this is April fools day, but everything in this blog is true. I am not yanking anybody's chain.

Steve, as you know, has been on hold for both radiation and chemo since Tuesday past. He has enjoyed the respite and has gained at least 5 pounds since the rest started. He is now ready to finish the task of 9 more radiations and 1 or 2 chemo treatments, with the approval of his doctors. While he was off, his intake orally has improved, his talking has improved with a voice that is reminiscent of his pre-cancer voice, and his appetite has improved.

Steve is very anxious for this ordeal to be completed. He is ready for a cold beer and a good bowl of chili from the Brewery Bar restaurant, a favorite haunt of his for 20 plus years. He hopes his taste buds return early after completion of therapy.

Again, Steve thanks you, and his family thanks you, for all the support you have given him.

I will keep in touch as we head into the last two weeks.

March 27,2007

Hi, Steve's dad reporting again.

Yesterday was a major milestone for Steve. He completed the full throat radiation and now proceeds to radiation for the specific tumors. Starting today, he has 10 days of radiation left. He completed the 1st of those last ten this morning and now has only 9 more to go.

Steve's weight has been going down since all of this started and the doctors decided today to stop the radiation for the rest of this week to allow Steve the time to relax, as best as he can under the circumstances, and also to try and gain some weight back. Steve's wonderful wife will continue to feed him the major amount of his needed calories through the tube, in addition to some of the calories Steve is still taking orally.

Next Monday, we hope to restart the last nine days of radiation.

Your thoughts, prayers, and cards are greatly appreciated by Steve and his entire family.

March 25, 2007

Hi, this is Steve's dad making this post today. Steve has been very successful the past two weeks and has completed all 10 of his radiation treatments. We are now down to the last two weeks and the chemo and radiation is starting to take its toll. The doctors told Steve these last two weeks would be the worst and they are shaping up just that way. Steve won't be making any posts for a few weeks, however, I will try to make a few entries to keep everyone informed as to his progress.

Everyone in Steve's family continues to thank you all for your concerns, notes, and prayers. All of your thoughts are so greatly appreciated and extremely helpful, not only to Steve, but to all of us.

Friday, March 2007

Another day down. Everyone counts! The burns on the neck are going good now and providing some discomfort. But all in all considered doing good. A friend with with us yesterday to take a look at what goes on with treatments and all. He had stopped the chewing tobacco when he heard I had it and I wanted to give him the chance to see why I should have stopped. Hopefully he'll be off if for good now. It's not anything I would like to repeat!

We changed around the timing of the schedule which seems to work fairly well. Helps me get in my three squares a bit easier and a good nap as well. When they say it takes it out of you it really does.

Thursday, March 22, 2007

We'll were still surviving out hear in cancer land!! We had a close call one this week on getting the RT done, gag reflex got me but we focused back in and got it done. Thank fully with Andrea on my side she helps me get through it. We're changing around the schedule a bit due to some scheduling at the Littleton office but it could be beneficial.

Biggest concern right now is my weight, as it is dropping. I'm getting good food into me but the just don't understand how I truly ate before! As most of you know it was not really to much on the healthy side! So know (even got a McDonald's burger the other night) it still didn't have the mayo on the fries! The 2 chimis loaded a t El Tehata just doesn't compare to what comes out of a can of boost! Can't wait to get my taste buds back and get get to some of that good stuff again. It would kill my to get steak on a stake and not be able to taste it!!!

The necks gotten pretty burned but we keep it gooped up and are getting by. Not much longer and we'll be getting into recovery time frame. Yahoo!

Sunday, March 18, 2007

Sunday was a good day considering it was Erbitux hang over day. Not a bad one though, more kind of tired me out that anything. The folks made it back into town Saturday night and came by in the afternoon as well as my bud and my sister and niece. Kind of a busy afternoon but once I got a bit run down I was up in bed for a recharge.

We did go to the infusion center in the morning to get a liter of fluid; it really does seem to help me quite a bit to keep the fluids nice and high through the process. I'm really fealling like a pin cushion but if it;s getting me better that's what counts! We'll keep on doing it!

Tomorrow we'll have another busy day. First off to Dr. Nemecheck for a review then over to RMCC - Litttleton for a liter of fluids and then RT. The break from the RT has helped a bit over the weekend on the burns so we'll see how another full week effects me. We'll really have to keep it creamed up.

Saturday, March 17, 2007

It seemed the luck o' the Irish was on me yesterday! All in all it was a pretty good day. I was able to get some food down the throat...yes throat...not just the feeding tube with out to much pain. Andrea had made some tuna salad for lunch and we gave it a try before using the blended and it went down OK! Had a couple of Inta Juices (loaded with calories) and an instant breakfast. For dinner I had been dying for a some Mexican food so Andrea made some smothered burritos and we blended one one up! I may miss the initial taste of food but I get the smells before hand and an occasional burp (which is strange) afterword....better than that canned crap let me tell you!

The radiation burns are getting going good now. A bit hard to describe. It's not really like your typical sunburn. Remember the stryrofoam padding that you would put on a new kids bike? Preformed. long tubular shaped? Just wrap around and Velcro closed. That's what these burns on the collar bones feel like. It's not really really painful, more a bit abrasive, annoying and scratchy...just all the way around the bone not just the exo skin layer. Weird. I keep lathering them with this burn cream I have been told to and hanging in there. What else to do!

We just keep on truckin'! One day closer to the cure!

Friday, March 16, 2007

All in all it's been a good week getting better everyday. I made it through all 5 RT's this week; and with the gag reflex this has been a challenge. I get an infusion of liquids everyday now that will vary from a 1/2 liter to two liters depending upon how I am feeling in the dryness category. Between the chemo and RT alone I am really dried out but then when you add into the plethora of meds that we have tried, are trying, and are going to be trying over the next couple of weeks.

We seem to be finding the right combo's at this time and are getting things dialed in. Between Phylliss and Andrea putting the heads together to work my meds and foods I am doing a hell of a lot better considering it all. Andrea is handling my meds for me and keeping right on line. Now that we have given up the canned food training and gone back to real food I am also have more success and feeling better. Solid food down the mouth would be a wonderful thing but right now I am fighting a mucositues; swelling and sores in the mouth and throat. I could possibly numb it up with some morphine but the after pain is pretty heavy. Right now I am hitting a lot of smoothies, instant breakfast drinks, cream of wheat, and dinner blended up so Andrea can put it through my tube for me. It's really weird to burp up a flavor that has not gone over the tongue put it beats the hell out of the canned crap.

Today we are modifying some t-shirts as my radiation burns have started flaring up. The collar bones are getting a bit on the crispy critter side - more like a little bit of a long day in the Colorado sun with out any sun screen, so we are going to be working to keep it from growing much worse.

Eributix should hit in here some time this weekend but we know what he's like and we'll get through.

We're still handing in, would love to talk to some of you but the tongue does make it a bit uncomfortable at this point. Every day down is another day closer to the cure.

Thanks you all again for you support!

Thursday, March 15, 2007

So sorry I have missed about a week and a half. It was a pretty big battle over that time in a physical and mental sense so I didn't do much writing. Just the thought of writing some of it down had me running to drive the porcelain bus again! Needless to say I did a great deal of throwing up last week - my least favorite thing to do in the world as well as something I really thought I was going to avoid all together through this so it was mentally taxing to be doing it multiple times a day.

You wouldn't believe the multitude of drugs and different types of drugs that I have been on and off over the last couple of months. Mind boggling! I think we are finally getting things dialed back into the wright combinations, amounts, and time frames to get through the process that we need to. Needless to say with all the drugs, I don't drive anymore so Andrea is my taxis driver. We spend a good deal of each day at one docs office or another. We have found out that if I can keep better hydrated I do better with the gag reflex. So a couple of bags a day 7 days a week!

The external burns aren't to bad yet, more of a light sun burn. Internally I have a lot of sores and have a lot of difficultly getting anything down the throat other than liquids. We use the feeding tube for everything else. This has been a curse and a blessing...the canned crap they give you that is supposedly the best thing and wonderful, coagulates in my stomach and when I puke it up it looks like the inside of a Nerf football!!! Last night we shoved some good old German noodles, potatoes, and hamburger gravy down there and I had a good nights sleep!

Have you really ever realized how may food commercials are on TV??? Even stuff that I wouldn't care about normally is really looking good. How about an extra long Conney chili cheese dog with tator tots? I don't know about you but that sounds like heaven right now while I drink my carnation instant breakfast!!!!

Many many many thanks to all of you have signed my guest book! I do look at it everyday and just to hear from you all brightens my days. I can't wait to get back to the real life and be done with this crap. Yesterday was radiation treatment number 21 so each day gets a little closer. Thank you again for all your support thoughts and prayers.

Steve

Sunday, March 4, 2007

Sunday was much similar to Saturday just through in the good old Erbitux hangover day with it and it was pretty much a bummer of a day. The folks came over for a bit to hang out and to give Andrea a break from it all. She has been a real trouper but also needs some down time just to go to the store or get away from it. The feeding continued as it was and Monday we have plans to get some fluids into me again.

Saturday, March 3, 2007

I forgot to mention that yesterday I got my first equipment and supplies for tube feeding. Saturday was a day to try to figure out all the how's and what's about the whole tube feeding thing. We were starting out on what they call gravity feeding. You pore it into the bag and let it run through the tube to the stomach. Sounds simple right? Where not talking gourmet meals here! For any of you who are parents or have baby sat young ones or every been barfed on my a toddler, that is basically what I am putting into my stomach. It's reminds of the similac or enfimil substitutes we used for the kids when they where little. The smell or just the thought brings nausea!!! Anyway, that's my diet theses days! The problem has been after all the barfing my stomach has shrunk so it isn't holding so much. I could probably get it stretched back out with a Chipoltle burrito but with baby food, not so much!

Saturday was sent trying to get this gunk into me in sufficient quantities to help get to some strength back up. It was fun!

Friday, March 2, 2007

Friday didn't start out so hot. The puking from the previous evening remained in the morning. Yahoo!!!! After that we figured I had to be dried out like no tomorrow so we talked with the nurses everywhere and cancelled RT for the day and headed in to RMCC - Parker to get some fluids hung on. I didn't think I was that dry but i was pretty much a dust bunny! It two almost two full bags of fluids before I was able to pee....not good! After that it was pretty much home and crash and burn.

Thursday, March 1, 2007

Thursday started out fairly normally. The folks went with to RT that afternoon and the March came in like a lion. The gag reflex has gotten way out of control and is the bane of my existence. I know most of it is all in the head but this monster I am having a hell of a time slaying. The folks got to see how I got all hooked up and zapped and then got to see me puke my groceries out afterwards. The really bad thing about the puking is that the throat is already sore from all of this and then to puke really aggravates it.

Wednesday, February 28, 2007

Wednesday was a semi normal day for the crazy day of the week. I was able to get thought the Erbitux and through the RT that day with out loosing any of my groceries. Dr. Reznick was getting after me a bit due to the weight loose and not using the feed tube so we need to start working on that.

To my friends, family and followers of my blog!

My apologies for not entering in any info lately. It has been a rough week but I think we're getting back up on top of it. For those of you who don't know, vomiting is the thing that I had in the world more than anything and unfortunately I think I have puked more in the last two weeks than I have in the last twenty years! Hence writing and driving the porcelain bus don't work to well together. I will try (with Andrea's) help to get a daily entry and get caught up this morning. Thank you all for you on going prayers, concerns and thoughts. They mean the world to me and my family. Thanks to all of those who has signed my guest book as well.

So....here we go. The wild a woolly!

Tuesday, February 27, 2007

Tuesday started out on the nausea side of the boat for me and lasted a good chunk of the day. Tried a few different things and spoke with Phyllis who had us try a few more but all in all I felt crummy most of the day. Had to cancel RT because of it...didn't need to puke again. By the evening I was feeling a bit better and was able to eat well again. Thank god!

The folks made it back into town and came by for a visit last night. It's nice to have them back in town for awhile. I didn't visit too long as I was pretty tired and headed up to bed. Hopefully Wednesday can be a no gag day! Yea right!

Monday, February 26, 2007

Monday started out like a good day even though I had a trip to the dentists office. The morning went along well and I got my fluoride trays and instructions from the dentist. Went to RT for the afternoon and all started out well. Earl is down smaller than a pea at this point, a couple of sores in the mouth but all is looking fairly good. When I went to get my therapy is when things went south. If I haven't mentioned it, I have a bad gag reflex! Getting my bite block in cause me to gag but some of the contents of my stomach came halfway up into my throat. No fun. Had to have them sit me up for a couple of minutes to get composed again before we started again. Got things going and my treatment in but after I took the bite block out I lost it completely! Thankfully Todd had given me a barf bag! Once I got the stomach to settle down we thought that I was done it was just due to my gagging.

Got home and took a nap, woke up a couple of hours later and had some dinner. All was going good and I was almost done with my soup when, wham, the stomach flipped and I was off to the bathroom. For those who know me well puking is my least favorite thing to do in the world. Oh joy! There goes dinner! Thought I was done so back out to relax. About a half hour later whammy here we go again. Thankfully that was the last of it for the night.

We think it may have been the possibility of a couple things that caused it. I was attempting to cut back on the multitude of meds I am taking and get off of the anti-nausea meds. Maybe not a good idea! I do take an anti-nausea pill 1/2 hour before treatment because the Ethyel shot I get can cause nausea. It may be the lack of the base pill let the shot work it's side affect. Who knows. Or I may have gotten a bug going around. Go figure.

Sunday, February 25, 2007

Sunday was my Erbitux "hangover" day, but all in all it was a real good day. I had the normal extra tiredness and sensitive skill but I felt pretty good other than that. I played around a bit with the meds trying to find the magic formula, and may have come close! I was able to eat a late breakfast, had a root beer float for lunch, and ate a good dinner and dessert. The cotton mouth is still there but not as bad as previous days. We'll see if we can keep it up!

Monday starts back RT and I also have a dentist appointment to get my mouth pieces for fluoride treatments. Yahoo!

Saturday, February 24, 2007

The weekend. It's nice to get a break from the treatments. Saturday and Sunday are my recovery days and a break from having to go to RT. It's nice but I tend to be way too lazy. It's really easy to lay around and do nothing. Caught some great shows on the History Channel but I really need to get off my butt and do at least a little something every day. I will be contact a nurse on Monday who has a physical therapy program for people going through their cancer treatments. Thankfully it is something that the insurance will cover as well and will do me some good mental as well as keep up my strength and tone.

Still fighting with the damn meds. Something the last two days has made the food just sit in the stomach, almost a lactose intolerance bloating kind of feeling. This makes it hard to eat or drink or put anything in there as it feels like it's ready to explode. We think we know what might be causing it and will cut that one out tomorrow and see how it goes.

Friday, February 23, 2007

First day of FMLA so I took it pretty easy. The cotton mouth has gotten pretty bad and a pain to deal with. Tried to eat grilled cheese for lunch; between the cheese, bread, and cotton mouth it was rather difficult to swallow! I decided that I need to stick with foods with a little moisture!

Today's RT was number 11, every treatment is one less! No new sores in the mouth thankfully! I got some new prescriptions for salivation and a rinse for the sores. At this point we are trying to figure out the right mix of pills to make things the easiest.

Thursday, February 22, 2007

Busy day today getting all the paperwork completed and turned in to start my FMLA/STD. The federal wasn't so bad, only four pages but the insurance stuff for Short Term Disability was a stack! As of Friday I will be off and can focus on the healing. With all the additional creams and pills and feed tube and everything it takes extra time in the morning and at night to get things done. Getting up around 4 in the morning to make sure I had time to get everything done and get to work on time so I could get my hours in before taking off for RT was taking its toll on me.

I'm guessing Andrea will be ready to kick me out to the curb before it's time to go back to work!!!

The day went fine, I had to go to the dentist to get impressions made for my fluoride trays. More gagging in the dentist chair! Nothing new! I have to go back in on Monday for fitting and instructions. We'll see if I am going to gag through this everyday! I hope not!

Maybe now that I'm off I can stay awake later than 8:00 at night! Thankfully we have DVR!

Wednesday, February 21, 2007

Wednesday was Erbitux day. We started a little later (20 minutes) than normal but it was enough to keep us busy and keep me from getting a nap between that and RT. The benedryl really nailed me and put me in a bad funk. We got home tried to eat some lunch and were off to RT.

Karen went with to RT so she got the grand tour and got to see me get strapped in for treatment. All went fine and as soon as we got home I hit the couch and took a good nap!

Tuesday, February 20, 2007

Busy day at work. All of senior and executive management out of town except for me left me a bit busy with a safety incident and some managers having employee issues. Put too much miles on the legs through the mud! Left me pretty tired by the evening.

Saw Dr. Leonard after the RT today and he had a difficult time finding Earl. Earl has gone from about the size of golf ball at his biggest to currently the size of a small marble or maybe a large kidney bean. And he gets smaller every day! I am getting a bit red on the neck from the RT but the mouth has remained really healthy. I do have some good cotton mouth and have lost a good deal of taste but other than that it's doing really well.

Once we got home I went straight for the couch! I was beat! Tomorrow is Erbitux day and then Karen will be taking me to RT since Andrea is getting some nerves burned in her neck in the afternoon.

Monday, February 19, 2007

Whoa Nellie! Time flies when your having fun!!! I missed a couple of posts! It's been a busy couple of days getting things prepared for taking some time off and normal day to day stuff.

Monday was a fairly normal day health wise, I've got a few more zits going. Not sure why, thought I was pretty well through with that activity but it may be because we missed the normal time for the Erbitux last week. May have thrown the body for a twist as I think I had gotten into a pretty good schedule.

Sunday, February 18, 2007

Pretty much another take it easy day. The Erbitux still causes a "hangover" and was back on Sunday this week due to the delay of getting my treatment last week. Sensitive skin and pretty wiped out most of the day. We were able to relax though, which was good, and watch the Daytona 500.

Another day closer to end...one day at a time!

Saturday, February 17, 2007

The weekend is a time for recharging and building up some reserve for the upcoming week. I take it pretty easy and today took a nice nap in the afternoon. I have to get up and walk around the house for awhile every now and then however just to keep the blood flowing and try to get the itch to do something down a bit. When your not used to just sitting around it actually gets old pretty quickly. I can look outside or in the garage and see a lot of things that I would really like to be doing, but I know I won't make it too long and I need the energy to fight more important battles right now.

The face continues to look better each day with fewer zits. The chest and back still have a good deal of them but nothing as big and ugly as the nose got! You really have to look to see Earl anymore, he is smaller than he was before Christmas. Nice to see (or should I say not to see!)! It's amazing how quickly he shrunk once the RT started.

Friday, February 16, 2007

Not much new for the day. I did get a call from the RT folks to see if I could come in a half hour early so I did. 6 down 32 to go! I was a bit on the tired side most of the day and took a short nap after I got home. The face has cleared up very well with some rash/acne still there but looking more like normal teenage stuff instead of the explosive face.

The weekend is here and so is the taking it easy.

Thursday, February 15, 2007

We had better luck today with getting things done. I got my Erbitux with no problems in the morning but it did run over on the time estimates that we were hoping to achieve, so needless to say I had to cancel the dentist appointment. We got done in enough time for Andrea to get me back home before she headed off to her appointment.

At RT today there was a lady there who was getting her last treatment. She had missed it the day before due to the systems problems and was a bit down on Wednesday as it had some special meaning for her. When she came out of her RT we all clapped and congratulated her and you could see she really beamed. I look forward to that final day as well.

The fatigue is getting to me pretty good and I'll probably be going on leave sooner rather than later.

I had a big lunch and then fell asleep after we got home from RT and when I woke up I really didn't want to eat so I thought I would try one of the Ensure type drinks. Wow, nasty!!! They are really gross! Andrea mixed me up a shake with a chocolate one and some vanilla ice cream and that was OK. By themselves...pukage!!!

Wednesday, February 14, 2007

Busy day but didn't get a lot done! We did get some good news from Dr. Reznick, who put the ruler to Earl again. Earl doesn't like the RT very much and has shrunk 1.5 cm in both length and in width! This is great and the direction the we like to see things go!

After that we went to the blue chairs to get my Erbitux. We got the benedryl started but then discovered that UPS had not yet delivered the Erbitux. It was delayed due to the storms around the country and showed a status that it was out for delivery. So we stopped part way through, capped off the line and went downstairs to eat some lunch. After we ate we came back up and hung out in the waiting room to see if it would make it. It didn't. So we headed home and I took a little snooze before we headed off to RT.

When we got to RT, we were informed that the IMRT had broke down and we were waiting for a tech to show up. We went in and sat in the waiting room with other patients. Finally they came out and let us know that the tech was not anywhere near there and it would be a while before he arrived. So home we went.

UPS did arrive later in the day and we now are scheduled to go in at 10:15 to get that done and then off to the dentist, then Andrea's doctor appointment, then to RT! It will be a busy day!

Tuesday, February 13, 2007

Tuesday started out getting my blood taken, my weekly check. I'm taking the nausea meds now and am able to return to normal eating and drinking. The day went fairly normal I did spend some time with HR to gather up the forms I need for FMLA and STD just in case I need them. The fatigue already is wearing on me and the thought of working through this is starting to fade. No need to push it to the envelope all the time; need this one to be on cruise control and to get healed up the best I can as quickly as I can.

Phyllis had me come in 15 minutes early today as they started me a new med called Ethyol that is designed to help keep my mouth healthy (protect salivary glands and help sores heal faster) while receiving RT. It's given as a shot, today I got it in the arm. No big deal at all kind of felt like someone gave me a frog in the arm but I didn't seem to have any side effects. That's a good thing. I was pretty tired last night and took a nap. It's amazing that I can take a nap and then when I go to bed I am out when the head hits the pillow!

Tomorrow is Erbitux day and RT so I'm sure I will sleep very well tomorrow night!

Monday, February 12, 2007

Been a couple of days since I blogged...have just been busy!

Monday was a pretty normal day, work and then off to RT. After finishing RT I met with Dr. Leonard and Phyllis. All is looking good so far except that I lost 3 pounds! Not good! I did have a lot of nausea on Sunday and again Monday morning and wasn't eating as well as I had been or wanted to.

I spoke with Dr. Reznick's office and Andrea went in the afternoon to pick up some anti nausea meds for me. They definitely help and I was able to eat a good dinner.

Sunday, February 11, 2007

I promised to get some pictures up so today I will! These pics are taken at the RMCC - Littleton office where I get my radiation therapy done. I'll try to put a description underneath each to explain what they are. Chris took these when he and Andrea came down to see what happened back in the room behind the thick door! While he was taking these Tod, the RT tech who zaps me, explained everything to them and what they were doing.

This is Phyllis, Dr. Leonard's nurse and the lady that takes care of all of us getting RT. She has a great sense of humor and is a lot of fun but also very knowledgeable and helpful when it comes to what I have going on. She has been a huge comfort and help to the whole family.

This is my mask that they use to strap me down to the RT table for my treatments. There is a hole at the mouth so I can get my bite block in and three holes in the forehead for aligning everything to my tattoos. The pins in the blue frame are what lock me to the table and keep me from moving. It's not as cool as the chain mail coif that I made but it works for what they are doing!

This is me strapped to the table in my mask and I have my bite block in (my lips aren't green! its the mouth piece!). You can see the frame on the bite block and the balls on it really lit up from the camera flash. The balls are part of a room GPS type thing that lets the computer know where I am. Once they align me to the room and and the machine to me then everyone leaves the room and my treatments begin. Once a week they take a couple of x-rays for quality purposes just to make sure that I am still in the same spot that I started in.

I'm feeling much better today over yesterday. Thankfully the hangover lasts only one day. The day after I get a bit of nausea but I can work through that. Just taking another lazy day to store up my energy for the fight.

Saturday, February 10, 2007

My bad day hit a day early this week. The Erbitux "hangover" had been a Sunday occurrence up until now, and it hit a day early! It's my "bad skin day"! When it hits, it's much like a hangover as I'm tired and worn out but the worst part is my skin is really sensitive. Taking a shower even sucks as I feel every drop of water pounding onto me. About all I do on that day is chill out and do nothing. So that's what I did! I pretty much vegged out in front of the TV all day. Bob and Jen came over for dinner and we just hung out and relaxed.

Friday, February 9, 2007

Chris came with to my RT this afternoon and got to see everything and take some pics as well. Both he and Andrea came back to the treatment room and got to see my strapped down and Tod explained everything everything to them about what was going on and even how they aligned me with the machine. I'll get some pictures up this weekend that Chris took. Without having to do x-rays the treatment goes really quick.

Earl was sore again afterwards and that's a good thing! He needs to quit complaining and get to shrinking!

Without the meds for the acne it came back a bit today on the face and felt like on the back. At least the mouth is in good shape still, let's hope it stays that way.

Thursday, February 8, 2007

The boys and I are glowing in the dark! Today was the first day of Radiation Therapy. We started out doing the x-rays that we would have done yesterday. The x-rays took awhile and man was the saliva glans working in overtime. It is extremely difficult to swallow with a mouth piece and a mask that starts mid breast and up holding you very tightly to the board! Got a little anxious there a couple of times...should have taken that ativan! Today they took x-rays from all 5 angles that they are shooting from and once a week they will take 2 x-rays for a quality assurance check of my alignment. Nothing really medically used with them but getting me aligned with the machine. So between the lasers pointing at the tattoos, the balls on the frame of the bit block mouth piece and the x-rays, they are very precise in what they are doing.

After they were done with the x-rays they started my first radiation therapy. They are shooting from 5 different angles and hitting each angle twice. One of the angles gets about 7 seconds, another gets around 12 seconds and the other 8 times are 20 to 30 seconds. Doesn't really take to long at all.

After they were done Tod showed me all about the machines and answered all my questions. Then we headed out to the waiting area and Andrea and I went to talk with Phyllis, Dr. Leonard's nurse. These people are incredible and spend as much time as you need to answer all the questions and concerns. Phyllis is a great help and has answered more questions than we can even remember the answers too! Today she gave us a cook book for cancer patients, a thermal lunch sack with Boost and other good calorie stuff in it and tons of advice, it really helped both of us.

The nose acne is drying out and now it's all just crusty! Earl is a bit sore tonight, not sure if it was the mask or the RT or maybe both!?!?

I'm going to have Andrea take some pictures of the RT room and me in my mask strapped down to the board tomorrow at my session so I can put them up on the blog so everyone can see.

Wednesday, February 7, 2007

Whoa! Little late on this post! Benedryl is a great sleep aid for me! I always get a dose of it before I get the Erbitux and yesterday it put me out!

We got a call from the Littleton office while at the Parker office that they were having computer issues and would not be able to do my x-rays on Wednesday, so they will do them first on Thursday and then do the first Radiation Therapy afterwards.

All went fine at Dr. Reznick's, Earl has grown a bit but that is because we haven't started the RT yet. Erbitux alone as a regiment will not shrink or make the cancer go away and has to be used in conjunction with radiation therapy. My blood looks good in all areas and the only affects that I am having from the Erbitux is the acne rash, and that I have real good!!! Good enough that the doc has got me on Tetracyline to hopefully help clean it up and an over the counter but behind the counter lotion called AmLactin for the dry skin. The lotion is a good thing, my forehead is so dry that it make it look like I have a bad case of dandruff.

Because we had to shuffle thing around for the x-rays, we had an hour break between the Erbitux and the doc so we ate lunch at the hospital. Parker Adventist is a nice facility and the food and prices at the cafeteria were both good. I don't like all the growth we've experienced but it is nice to not have to spend an hour one way to get to the hospital.

Tuesday, February 6, 2007

And so it begins. Today was the start of daily appointments (on weekdays) from today through April 2. Today was the quick and easy one getting my weekly blood drawn for testing. Tomorrow we have Erbitux, Dr. Reznick, and final x-rays before the radiation therapy. I have gone in and added the RT's to the calendar, they will be Monday through Friday at 3:15 pm. I modified the appointments for Wednesday and once we figure out how we will rearrange the Erbitux appointments I'll modify them as well.

It seems that the acne rash is beginning the downhill slide. I think I was at the top of the hill on Sunday and Monday. We both think it is starting to fade, the amount of new zits has decreased dramatically and a lot of them are fading away. The nose is still the worse but not a lot of new, it's still pretty crusty and I am feeling like I have a Carl Malden like nose! I can't say that I'll miss it!

Monday, February 5, 2007

Last weekday without an appointment! Tuesday I get some blood taken so that will count as an appointment. Had to juggle around some stuff again as on Wednesday I need to be in for x-rays in final preparation for RT which will start on Thursday. So...I changed the Erbitux to 11:00 am, moved the Lasik Plus to next Monday and kept the appointment with the doc at 1:40 pm.

I need to try to get the calendar updated and will as soon as I get some time. I think I will be taking Wednesday off just to save some stress!

Still hanging in there and enjoying the warmer weather finally! We're hoping to see the street again in front of the house!

Sunday, February 4, 2007

Sundays are kind of my recharge day and it seems my funk day from the Erbitux. Not really sure how to describe it, just a valley in the week of the drugs I guess. It does seem that Sunday is the day that the drugs kick pretty hard on the face as well. I put up the pic on Saturday and now have a bunch of white heads on the forehead as well.

A new week and another day closer to the end of the zits! I'm ready for it to be gone!

Saturday, February 3, 2007

Not a lot to report today, trying to take it easy and stay rested up. We did take a picture of the zits again to put up here.

As you can see the Erbitux is working really good!!! It is limited to mostly the neck and above, with some on the chest and back. The worst is probably in the ears although it does make the head itch due to the ones in my hair.

Another day done, another day closer to the cure!

Friday, February 2, 2007

Friday and another day without an appointment! That will all change next week as I am due to start my RT next Thursday. Time needs to be worked out yet as I received a voice mail with the info but the time will conflict with my Erbitux time on Wednesdays. I'll be speaking with them on Monday and we'll see what we need to do!

Not much to report today the zits are still there! It is strange as it feels like a mask, just in time for the Marti Gras! It would be nice if I could take it off for awhile.

Other than the rash I'm doing good and feeling fine...ready to get the RT started.

Thursday, February 1, 2007

A day without an appointment! It seems rare these days. Had a busy day at work to keep the mind busy. I did try the new cream that the doc gave me for my face; about an hour later I was itching like crazy! Finally I took a couple of ativan to take the edge off as I was about to go nuts!

I'm working on grazing throughout the day so that when the RT starts I can make sure I'm getting my nutrients as I am suppose to. This is a bit of a change when you be come a creature of habit eating the big meals at certain times. I have actually tried yogurt for the first time in many years and this stuff now is not so bad and has a good amount of calories in them.

The Erbitux is really working now; the nose is taking the brunt of it and has gigantic white heads all over it...kind of looks like how you would picture a trolls nose just with white heads instead of warts!

I tried some more of the cream late in the evening before I went to bed but had to get up an hour later because the inching was to much. A couple of benedryl, some cold wet wash cloths and warm wet chamomile tea wash cloths and I was good to go again.

Wednesday, January 31, 2007

We started out the day by making another trip down to RMCC - Littleton to get setup and do the simulation for my RT. First thing was to make a bite block; pretty much like going to the dentist for an impression (flash back to wearing braces!!!). They squirted the green epoxy goo all over it and I had to bite down on it for around 5 minutes. This is a very snug fit and to take it off takes some wiggling of it! Once it was set we went into the the RT room as there is a square type frame attached to the front of the bite block with 4 small balls attached to it. This works like a room GPS unit and the computers know exactly where and how my head is positioned. I had to take it out and put it back in 10 times so everything could be tested and make sure it was all OK. Man was I a slobbering fool by time I was done! However, I did not gag even once! Amazing what a couple of ativan will do for you!

Next we went back into the CT room and I had to lay down on the bench with my head on a little rest block and they stretched a warm plastic thing over my head, neck and chest. This mask is a very snug fit over the shoulders and above to prevent movement, and it does a good job! There is a whole for my mouth so I can get my bite block in and three holes in the forehead where they gave me tattoos. The tattoos are each of a large dragon fighting with a lion and a tiger; only they are sooooo small they look like small dots or even a black head on my forehead! These are used to line up with three different red light laser beams in the treatment room so they can make sure I am in the right place. All of this is very precise and calculated.

Once fitted with everything they performed a CT scan (with contrast) to create the initial picture so the doc can figure out the angles and dosage for the treatment. This took about 25 to 30 minutes. My daily treatments will be much shorter in time than that CT Scan!

We left there and headed off to RMCC - Parker for my appointment with Dr. Reznick and my weekly Erbitux.

At the exam Dr. Reznick felt that Earl has gotten a bit softer that he was before! I think so too but wasn't sure if it was just wishful thinking on my part! The exam went well, nothing out of the ordinary. I did ask him to cut back on the benedryl since last week it knocked me out. He prescribed some cream for the face...it's really gotten bad! After that I was back in my lazy boy getting my week dosage. Even with half the benedryl I was still pretty tired and crashed early.

Tuesday, January 30, 2007

Happy Anniversary to Us! One year to the day since we quit smoking!

We headed to the hospital nice and early this morning to get my stomach tube put in. I'm not sure what I was thinking on how they would do this (maybe in denial!) but they did go down the throat into the stomach. I really don't remember much of this at all other than a shot of the numbing spray in my throat, my telling the doc that I have a sensitive gag reflex, another shot of the nasty tasting numbing spray, and then waking up in post op!!! Not sure what they gave me but it knocked me on my butt. If I think real hard I can remember some of the trip home and up to bed.

Needless to say I slept a good chunk of the day. I woke up at one point and the stomach hurt pretty good. Not the incision but the muscles. The tube goes in right below the diaphragm and that upper couple of cans of the six pack (that I used to have!) were cramped up something bad. Andrea gave me a couple of Vicodin and I was back out for a few more hours.

I woke up later and was able to get up and eat dinner. We sat down to watch some TV but didn't last very long before I was out again. Andrea's read through all the instructions and is ready to go, she also helped me to clean around it before bed. Still trying to figure out the best way to wear and tape up the tube, it will take some trial and error to come up with the most comfortable way.

The rash is still hanging in there! The white heads are focused mostly around the nose and is looking pretty gross! It is a really weird feeling - it's kind of like a mask on the face, that's what it feels like on the face all the time and when I was it. Well we most definitely know that the Erbitux is working!

Wednesday I get my mask and bite block made for RT and another dose of Erbitux.

Monday, January 29, 2007

Well the Erbitux is working very well!!!! I didn't have this many zits on my worst teenage day! It has really gone after my nose and cheeks for the worst of it, my nose is red and swollen like I'm an alcoholic! It is not just limited to that area though, I have them all over my face, head and neck! It doesn't hurt - unless I need to blow my nose! - but it does kind of itch in the hair! Only a couple of people commented at work, I'm sure the rumor mills are cooking up some good stuff though.



It seemed those first couple of days that nothing was going to happen and I was getting a little concerned that maybe it wasn't working. Well we definitely have no doubts now! That's a really good thing!


<====AHHHHHH! Scared myself as well! Nose and cheeks are a bit swollen!

<===Click on the pic to get a larger view.

I stopped by and got my blood taken today due to the surgery in the morning. We have to be at the hospital at 7:00 and surgery at 8:00. Shouldn't take to long to just put in a feeding tube so we're looking at getting out of there around 10:00.

Sunday, January 28, 2007

Well when they talked about getting an acne like rash they weren't kidding! It came through real good on Sunday. It is primarily focused on my nose and cheeks but I do have it all over the face, some areas worse than others and in my hair! I think my entire head has them, it feels like it anyway. We can see that the top is covered through the thinning hair!

Andrea and I went to the store to see what we could find that should be somewhat easy on the throat. We picked up things like jello, pudding, yogurt, soup, fruit, etc... Jessica said "hey! who gets all this good stuff?" I think that I would rather eat some good home cooking!!!!

I have been working on my mouth rinses and and all the things I need to do to keep the mouth and throat healthy through the process. I'll explain what it all contains later.

Monday will be one of the rare days over the next couple of months that we don't have any appointments at all! After that we'll be pretty busy!

Saturday, January 27, 2007

Saturday was a day off from most everything. We headed up the hill to do a little gambling (came home $11 ahead!) and pretty much just get away from everything. A little mental hygiene for the two of us! It wasn't very crowded due to the snow so the smoke wasn't bad and we had our pick of whatever slot we wanted.

I started to break out - the side effect of the Erbitux - pretty well through out the day! This is a good thing by the way as it shows that the drugs are working! My nose has taken the brunt of it so far and is pretty red and full of zits!!! I'm worried my voice will start changing again since I feel like a teenager with all the zits again! I do have them showing up on the cheeks, forehead, chin, neck and chest as well. Once it really gets going I'll post a pic or two.

One thing I forgot to mention in regards to the RT; I'll be getting an injection in the butt before every treatment...35 shots in the butt...may not be sitting well by the end of this!!! We don't remember what they are for so we'll have to ask again. We have been completely inundated with information this week and we tried to write down as much as we could but we did miss a couple of things!

Friday, January 26, 2007

Not a lot to report for Friday, still had a bit of a head ache hanging in there. Still waiting for the rash to appear. I keep thinking that I see something but when I have Andrea look at she doesn't see anything! Wishful thinking on my part I think. Once I stop looking for it, it will show up!

Since a lot of people haven't seen Earl, I'll get one of the kids to take a picture this weekend and I'll post it here on the blog.

Thursday, January 25, 2007

Woke up with a brutal head ache this morning...I think I was a bit dehydrated. The Erbitux really dry's you out. Now I know that I need to keep the fluids going in all the time to keep up with it.

We went to the Radiology Oncologist, Dr. Leonard today at RMCC - Littleton. Once again some really great folks to work with. The doc is very soft spoken and very well respected amoung his peers. And he was patient with me and hair trigger gag reflex! His nurse is great and I think we'll have a good time. The RT gameplan is next Wednesday the 31st we return to RMCC - Littleton to be fitted with my mask (a plastic mesh that will begin around the upper lip and go over the head to a frame that will fit on the table to help hold my head still). I'll also get fitted for a mouth piece or bite block. There is some serious high tech involved in all of this - the mask will get three holes cut in it around the upper forhead (where the hair line used to be!) and this is where they will tattoo 3 spots onto my head to line up the head with the lasers. The mouth piece has some metal balls that work like a localized GPS unit while I am in the room. They use a combination of the lasers and the GPS type stuff to make sure that where I am being radiowaved is exactly the spot that they want to be - everything aligned in 3 D.

I'll need to go back in possibly Thursday or Friday for a dry run where they will only do a CT scan to provide the 3D imaging and alignment, then the doc will determine angles and dosage for my visits, then we setup the schedule. It will be every weekday M-F for 7 weeks - each visit will be about 15 to 20 minutes in the room. Not bad!

They gave me some rinses for the mouth and most importantly some atevan (sp?) (a drug that mellows you out - anti anxiety drug) to take before next week so I don't puke on the guy trying to get my teeth impression!!! Luck him!!!

I forgot to mention in the previous post that I have surgery scheduled next Tuesday the 30th to get my feeding tube put in. I will probably not need it for a few weeks but am taking a proactive approach in getting it put in now while my strength is still good and I can recover more quickly.

That's about it for today...I am tired! Tomorrow is a day without an appointment! We won't know what to do!

Wednesday, January 24, 2007

Didn't post last night as the Benedryl was pull hard on the eye lids!

We started out the day with a trip to see Dr. Nemechek, another good doc, been pretty lucky in this area! We talked for awhile and I filled him in on everything then I got my nose numbed again...terrible feeling! He took a good look at Bill through the fiber optics and even let Andrea take a look at him, she thought that was pretty cool! He agreed with Dr. Dickey and Dr. Reznick's analysis and informed us that he will not be doing surgery on either of the boys. They will both be taken care of with RT and Erbitux.

We headed over the RMCC - Parker next for my first dose of Erbitux. This was a base dose to get things started so it was a big one and took 2 hours. I got the Benedryl first to help fight off any allergic reactions I might have. Didn't have any! We grabbed some dinner on the way home, ate, and then I crashed on the couch. Woke up with a major head ache that we thought was from the way I was laying. Took something and off to bed to wake up around 3:30 with an even bigger head ache, I'm pretty sure at this point I was dehydrated. Felt like one of those very late nights with way way way to much booze and cigarettes...throbbing if I blinked my eyes! That is one of the side affects...wish I had drank more before I slept!

Thursday we are off to the Radiology Oncologist and get things scheduled and planned out.

Tuesday, January 23, 2007

This afternoon we were back into RMCC - Parker for training on what is coming up with the Erbitux. Once again I was impressed by the folks at RMCC. One of the nurses sat down with us and explained what they were going to do and side effects, the whole works. Even though Dr. Reznick had filled us in on everything they went over it all again to make sure we are comfortable and know what to expect.

Tomorrow I get my first base dose of Erbitux; the base is double the normal so I'll be on the bag for 2 hours this first visit and then just one hour in the following treatments. They are going to give me a little benedryl (sp?) with it just to prevent any immediate reactions. The potential reactions could be an acne like rash and possibly the runs; beats the daylights out of the chemo side effects!!! They have a room there with about 8 lazyboys and that's where I'll be hanging out every afternoon for the next 7 weeks.

I do have the appointment with Dr. Nemechek tomorrow as well and he may do another needle biopsy of Earl and we can discuss whether Earl needs to be surgically removed or not. He and Dr. Dickey have already discussed Bill and sounds like he is not going to want to cut on him.

We did speak with the nurse and let her know that I do want to go ahead and get the feeding tube now instead of later, so she contacted the gastro docs office for us and they will call us tomorrow to set up an appointment. I figure it will be easier and less of a strain on the system to get it put in now instead of waiting until I really need it...a little proactive work should make things easier in the long run. It all sounds pretty simple and easy to use; if it keeps my calorie intake and liquids where they need to be it's worth it.

So tomorrow the battle begins! Sorry boys but you days are numbered!

Monday, January 22, 2007

WOW! It's been a crazy day! I'm not sure where to start so I guess let's lead off with the good news!

Bill and Earl are all alone!!! The PET/CT shows that boys are the only hot spots - it has not spread any further than that!!! Whew! We are breathing again!

So, where do we go from here? Dr. Reznick is ready to attach these guys and so am I, we have set up a tenative appointment for Wednesday afternoon to start on my base of Erbitux before we begin the RT. It will be administered once a week via IV, it takes about an hour once a week and I have already set up my next 7 appointments to get my treatments. We'll be going into the office tomorrow for a training session, done by the nurses, to educate on the drugs and what to expect. I cannot talk highly enough about the staff of Rocky Mountain Cancer Clinic - Parker especially Dr. Reznick. These folks are incredible at all they do and working with both myself and Andrea. The doctor speads time with us and explains everything, answers all of our questions and is truely interested in making sure I beat this cancer. I will be getting my blood tested on a weekly basis to make sure it is all good; CBC every other week and checking magnezium and other items every week.

Everyones big question, what is Erbitux? Well it's not chemo, it is a drug that works like chemo but without the nasty side effects. We could get into the science of it but I will let you read that part of it if you want to. The drug was released initially for use on Colorectal Cancer and got it's FDA approval for use on SCC last year. Dr. Reznick has had good success with it in conjunction with RT. Here are some links to more info regarding Erbitux:

http://www.spohnc.org/docs/erbitux.htm
http://www.spohnc.org/docs/FDA_News_Erbitux.htm
http://www.spohnc.org/docs/erbituxresponse.htm

I am also adding a couple of new links in the links section to SPOHNC and the Yul Brynner Foundation, a couple of sites dedicated to support and preventions of head and neck cancers.

I still have my appointment with Dr. Nemechek on Wednesday and Dr. Leonard on Thursday, and there we'll talk with him in regards to his game plan on my RT. I believe that it will probably be a M-F treatment plan but how many times a day, how long each treatment and how many weeks will be determined by the doc. I'll be doing a lot of typing this week!

It feels like a 700 pound gorilla has jumped off my back now knowing that it has not spead. I'll be updating the calendar with what we know so far.

Thanks to everyones kind words who have signed the guest book so far, it means a lot.