Ding Dong the Tube is Gone

Not too much has changed since my last entry; the tongue is still sore and I still have a lot of mucous. I have been maintaining my weight at 173.8 where it does fluctuate but that seems to be the right weight. Today was a good day. I saw Dr Dekovitch and he removed the feeding tube. How was that done you might ask? Well, he just pulled it out. Took all of five seconds. It feels goood to be unencumbered. At last my body can return to some normalcy and that's a good thing. Now, if only my tongue would heal and the mucous thin out I would really be in good shape. Of course there's always not being able to taste everything, but I guess you can't have it all.

Tuesday's Results

We arrived at M.D.Anderson at 6:15 AM for our day of tests and meeting with doctors. I got a very good report. There is no sign of any cancer; the lymph nodes are reduced by 90% and there is no sign of any cancer there so the Radiation did what it was supposed to do. Dr. Weber said there is nothing worrisome and Dr. Beadle was more effusive in her analysis. I return in six weeks for a PET scan and an ultrasound with a possible F/A biopsy. Both doctors were pleased with the results so I am, too. All in all, a good day

An Important Week Starts

I slept well last night, that's two nights in a row and I consider that pretty good. My weight seems to be stablized at 173.6 and I have no complaints with that. This morning I had a cheese and vegetable omlette, I was even able to taste it.

I met with the dentist today and he said he could see where my tongue was sore. He felt it was on the edge of healing but I needed to do some things to help it along. I am to stop using the carafate and am only to use the lidocain three times a day. I am to continue doing the baking soda rinses and am to wear the upper tray at all times except when eating.This is the tray I was supposed to use when applying the fluoride. He gave me a new antibiotic which he refered to as the golden bullet. It will deal with any infections the last antibiotic may have missed. He feels this will take care of the problem. We'll see. Tomorrow is my big day. I meet with Drs. Weber and Beadle and I have my scans.

For lunch today I made some pasta and fixed it with tomato and mushroom sauce and added some of my vegetables. I know if I could have tasted it, it would have been delicious.

One of My Favorite Days of the Week

Things have settled into a routine. I didn't sleep too well last night as my tongue was hurting and the mucous was pretty thick. Monday I hope to get this resolved when I see Dr. Chambers. Other than that I am feeling pretty good. I still don't taste half of what I eat but I suspect my taste buds will return at some point or other. One of the more pleasant side effects of the radiation has to do with my beard. I no longer have any on my neck and the lower part of my face. It's almost as if I had a peel; anyway it makes shaving a lot shorter and a more pleasant experience.

I think it may soon be time to phase out my daily blogging; perhaps next week after my appointment with my doctors might be the appropriate time. I'll let you know.

Over The Hump

I slept much better last night but my tongue and mucous are not better. talking hurts and I use the numbing medicine before meals but it doesn't last long enough. I guess I'll tough it out until Monday. Today was Grandpareents day at Kolter and we spent a delightful hour with Miriam as she ate lunch, talked with her friends and picked up a couple of books at the Book Fair.It was enjoyable. Nurse R just called from Central Market; she's planning my dinner, I think it will be a surprise. For lunch I had a quiche and vegetables. My tongue was in agony. Maybe tomorrow will be better. One can always hope.

Foggy, Rainy Tuesday

I slept fairly well last night and my major complaints of the day are my tongue which still hurts and the heavy mucous which seems to be a tad better. I'll hope for the best. I see Dr. Chambers, the dentist on Monday and maybe he can do something about my tongue. I have been using the swish and swallow medicine although I have been doing swish and spit. It seems to help enough to allow me to eat with out causing too much discomfort. My weight today was at 173.6. I am getting better each day and as soon as my two problems clear up I will really feel good. Today for breakfast I had oatmeal with brown sugar. It had a little taste so that was good. Today I will not stray too far from home.

Monday, Again

The Condo party was last night and it was a good one. The food was exceptional and I was able to partake. Of course a lot of it had no taste but it looked good. I slept fairly well last night; my tongue seems to have gotten worse but I am applying the numbing solution before meals so it doesn't impede that progress. The mucous is still thick and shows no sign of thinning which is disturbing.

Today it is cold and rainy so I will not venture too far from my front door. At the weigh-in this morning I was at 173.8, up two tenths of a pound. I had a cheese and vegetable omlette for breakfast. I don't think Dr. Willerson will be too happy with my cholesterol level. Oh well, can't please 'em all; but the "Swallow lady" will be thrilled. So, I'm thinking that I am now off the feeding tube and will have been off it for more than two weeks when I see the doctor on the 15th, therefore I should be able to have it removed in the near future. That will also make me feel a lot better.

Weekend Update

All this eating seems to be working. My weight is up to 174.4 and I'm thinking about scaling back but Nurse R says that's a no no and I will lose weight once I get on my normal diet. This morning I had a vegetable and cheese omlette. It was delicious. I decided to dispense with the morning Ensure as I packed more than enough calories in that omlette. I slept fairly well last night, only up three times. I still have thick mucous and my tongue still hurts but I am feeling better.

Sunday-

Last night we babysat and had dinner at The Silver Palace, a Chinese buffet. I sampled a lot of different dishes, many of which had no taste but some of which did. The broccoli was particularly delicious and a couple of chicken dishes did but most had little or no taste. It was quite good. Tonight is the Condo Holiday party an it will be another opportunity to sample different foods. Today my weight was at 173.6 so it seems to be holding. If I can maintain that I will be happy.

Hey, It's Snowing

What a rare sight, snow in Houston. Happens once every 10 years, we must be due. As for me, I had a not too good night. Mucous seems to be thicker and I was up at 4:00 doing a a rinse to see if it would help. It did, a little. Now I'm up. Breakfast this morning was two packets of oatmeal (no taste) and an Ensure. My weight was 173.6 so it looks like it is holding. Today is my second day without the tube and I'm loving it. Nurse R has not discussed lunch so that will soon be on the agenda. More later

The snow continues to fall making the outside look like a winter wonderland. It's not sticking, yet; if it does we will be in for some real problems. For lunch I had corn pudding and an earthburger, one of my vegan recipes which is normally quite good, however this time it was tasteless. Now I shall go and watch the snow.

Another Beautiful Day in Houston

I slept fair to poor last night. Terrible thick mucous. It doesn't seem to be thinning. The breakfast highlight consisted of waffles with tons of syrup (tasteless) and an Ensure. My weight this morning was 173.2. I'm off the feeding tube and that makes me feel good. Of course I had to make my deal with Nurse R in order to achieve this and that is two Ensures a day. We had a brief discussion of lunch and at what time I would be eating it. Today is a telephone sales meeting and the break time for lunch is 1:45 Houston time so that is when I will be dining. An individual quiche and corn pudding is on the menu. More later.

Lunch was very good. The quiche was most tasty and fattening, as was the corn pudding. I opted out of the second Ensure as I was totally full and had no room for anything else. I did have three of those little chocolate tidbits (50 calories each) All this was done during the 30 minute lunch break from the sales meeting.

It's Wednesday and The Sun Is Shining

Looks like another beautiful day albeit on the chilly side. I will try to get out later and enjoy some of the weather. Last night I had a spinach quiche which was tasteless but loaded with calories. This morning I tipped the scale at 173. I seem to have no problem gaining weight. Nurse R noted that I did not have an Ensure yesterday and vowed that would not happen again. I am feeling pretty good; I still have thick mucous and my tongue still hurts but not as much. Maybe it is starting to heal. More later

Lunch was not spectacular have even forgot what I had but I did have half a nutrition bar which was tasteless. Dinner on the other hand is guaranteed to bind one up. Two enchilladas and corn pudding. My corn pudding supply has been increased and I'm loving it. Nurse R and I discussed the morning feeding and decided we will dispense with it tomorrow. I had to promise to have an Ensure with breakfast and one more later in the day. We'll see how this works. We even discussed tomorrow's dinner which will be a veggie pizza supplemented with additional vegetables.

I did get out this afternoon but it was cold and windy and I soon returned to the warmth of my home where I had the heat set for a comfortable 75. I finally got warm.Nurse R returned and immediately put on the air conditioning. I retreated to my robe and blanket. And so it goes.

Tuesday, Again

I didn't sleep so well last night, the mucous was really thick and causing me some problems. I guess I just have to wait for that to get better and Dr. Beadle assured me it would. Weigh in this morning 172.6 I gained 2 ounces. Nurse R has told me she will probably have to supervise the weigh in to make certain I have no additional weights on my person. She told me about a woman who went to her weigh in's with stones in her pockets. I told her I had no stones on my person.

I had pancakes for breakfast today with vegan butter (80 calories per tbs) and a lot of syrup. I made my appointment with my cardiologist Dr. Willerson and I am certain he won't be happy if my cholesterol rises. You just can't please 'em all. However, we deal with first things first.

I had a fine lunch. A big bowl of barley soup and the rest of the corn pudding. This was soooo adequate that Nurse R didn't mention having an Ensure. I'm certain the next conversation we have will be about dinner.

A New Week Starts

I slept much better last night probably because I was exhausted from the previous two nights, but I'll take it. Weight still hanging in there at 172.2 so the calorie packing is working. Nurse R discussed my days meals. Nothing like a meal discussion at 7:45 AM. She just said the reason I slept better was because I was out and about yesterday and I took a walk. Could be.

Today is dank and rainy so I will keep pretty much to home. I still have heavy mucous and my tongue still hurts but maybe it is a little better. Its hard to tell. Lunch, another high point of the day consisted of clam chowder and an Ensure. Dr. Beadle called to see how I was doing and she said I'm pretty much on schedule. She said in another two months I will be feeling like my old self. I hope she's right. I mentioned my sore tongue and she sent out a prescription of some numbing medicine which should help. They have medicine for everything and our cabinet is a regular pharmacopia of mystical drugs.

Dinner. Nurse R called to see what I was having. She already knew as we discussed it ad nauseum but she wanted to hear it one more time. I had a bowl of chicken soup, enchilladas, corn pudding and chicken. Monster portions which were not photographed. Now I'm stuffed.

Weekend Update

Bad night Friday night. Horrible indigestion which forced me to take Mylanta at 1:30 and a Zofram at 2:00. Did not sleep well at all as I had and continue to have thick mucous. At weigh in my weight is up another pound to 171.2. I suppose that is good. Last night I had a solid dinner and did not have the feeding tube. Obviously Nurse R was at work; however I photographed the dinner as it sat on my plate and photographed the plate after dinner so she could see the residue. Got to produce the evidence. Anyway dinner was good; creamed spinach, corn pudding, tuna fish and sweet potato. Apparently it passed the Nurse R test as I got no grief about not having the feeding tube.

Before

After

Had a fair night Saturday and got up at 8:00 which is pretty good. I had a cheese omlette with corn pudding for breakfast. I'm doing good my weight is at 171.4. Of course my arteries are going to hell but my weight is fine.

Today I'll watch some football and take a walk. Nurse R said we must plan my meals. Oh Joy!

Black Friday

Actually it's a good Friday. I got up at 8:15. I wasn't sleeping but resting nicely. I feel pretty good today except my tongue is still hurting. I am taking an antibiotic for it but I doubt it will do much good as there doesn't seem to be any infection there. I'll know more about that on Monday when I talk to Dr. Chambers and get the results of the cultures.

Yesterday was a good day, Thanksgiving dinner at Julie's and the whole family was there. We're a compatible group so it was a pleasant experience as it usually is. Nurse R is doing som shopping today; how she managed to get off on Black Friday is an amazement, well actually it's not a big time for couture. I'm working on my catalogs today and am going to watch some football.

Still being good. I had oatmeal (tasteless) for breakfast and potato soup and an Ensure for lunch. My weight seems to be maintaining at 170.2 lbs. If I can continue to maintain that I'll be happy.

Happy Thanksgiving

I have much to be thankful for this Thanksgiving. I am on the road to health and am feeling a little better each day; I have my wonderful and loving Nurse R to keep me on the staright and narrow, my daughter Mini Me who fills in admirably when Nurse R is not available, my beautiful granddaughter Miriam who never ceases to amaze me, my son-in-law Nick who has always been supportive and you my many friends who are seeing me through this adventure. Yes, I have much to be thankful for.

I wish you all a Happy and Peaceful Thanksgiving.

Still Behavin'

I didn't sleep very well last night but that is nothing new although I was told that I did. For breakfast in addition to my two cans of nutrients I also had some instant oatmeal, today's variety was banana bread. Still tasteless but I ate it all, anyway. For lunch I had a two egg scrambled egg omlette with a heart stopping two pieces of cheese melted into it. Not exactly on my vegan diet but some things I guess must just have to take a back seat to getting better. The omlette, by the way was tasteless but I ate it all anyway. I was quite full after that and passed on the Ensure. Wait, there's the phone. Okay, that was Nurse R checking in to see how lunch went. She will provide various reminders about the Ensure which will not go away. It's wonderful to be loved. More later, maybe.

Poster Child

Today is my first full day of being a model patient. I had oatmeal for breakfast along with my normal feeding and then I swished the elixer around my tongue. It does seem to be helping. I'm still looking for my first full night of sleep as I seem to doze in two hour increments. Dr. Beadle won't give me Ambien which I feel would be the solution but she said she felt I would do just fine without it. I am having tuna fish for lunch; got to exercise those throat muscles besides I am seeing the swallow lady in three weeks and want to bask in the limelight of being the "Turn around player" of the month. I call Dr. Chambers tomorrow morning and get the results of my tongue culture and some medicine to correct the problem. Once my tongue is better I will feel better.

It looks like a fairly miserable day, rainy and dank. I am quite content to be ensconsed in my robe and blanket. Maybe I'll do some work for PGW.

Riot Act Read

I had my appointment with Speech Pathology today (Swallow) I was out gunned three to one plus Nurse R. Okay, so I haven't been the best of patients; it's hard to eat when your tongue is as ulcerated as mine and when food has very little taste. Not so, according to the big three. You must eat to promote healing, prevent weight loss and not allow the muscles atrophy. I GOT IT!!! I am mending my ways. Also if I ever want to have the food tube removed I have to sustain weight on my own. She did say that at the rate I am going I will lose two pounds a week which would not be a good thing. Upon returning home I had an Ensure, refried beans,guacamole and a cup of soup.

I also met with the dentist, Dr. Chambers, who said I was doing well but did have a huge ulcer on the right side of my tongue which of course makes eating painful. He took a couple of cultures and I am to call him on Wednesday to find out what the problem is and to get a prescription to cure it. He was most sympathetic. Now I have to go do a couple of rinses for my tongue.

Hey, It's Friday

Last night I slept on and off. I still have very thick mucous and that is what keeps me awake despite the fact I had four doses of the horrible mucous medicine throughout the day. Last night I had a small amount of chicken. What was surprising was that the chicken had a taste. I take this as a good sign that perhaps the taste buds are improving.

I enjoyed listrening in on the sales meeting andtaking notes. It made me feel a part of the whole thing. I got very tired around 5:00 and was forced to leave the final 2 hours but it was good attending.

Today it's raining so there is not going to be much of an opportunity to take a short walk outside, maybe I'll walk around the lobby. I have been told that I need to have 2 Ensures today. Maybe the calories help. I gained a pound and am now up to 169. I know this makes Nurse R quite happy.

A Bad Night

It seems I just can't put two good nights together. The pink medicine did not work and I had very thick mucous which kept me up. I kept drinking water and then I had to go to the bathroom; kinda like a vicious circle. I switched medicine today and will try a different variety to see if it does any better. Nurse R predicts sleep tonight. Still nothing tastes good. The puddings had no flavor or taste but hopefully that will change. I detected a cherry taste to the jello but it doesn't have any calories so who cares? THe good news is that the Ensure does have a taste which leads me to have some faith that my taste buds have not been completely shot off.

Sales meeting again today. It does keep me occupied and involved so that's a good thing. It is over on Friday but I'm glad they were able to hook me up. More later

A Good night

Last night was the first good one I have had in awhile. I went to bed at 9:00 and after a little queasyness I fell asleep and woke up at 6:25. Maybe the pink medicine helps. I'll continue taking it. I still have very thick mucous and that seems to be causing my main problem; that plus my tongue still hurts. However, all things considered I feel better. My weight is down to 168 so I may start trying to have two Ensures today. I just have no appetite.However, if I ever want to get the feeding tube removed I'm going to have to start eating on my own. Easier said than done, but I feel I still have a week or so to put plan C into effect. I don't have a clue as to what  plan C is.

I have the sales meeting by telephone today. Yesterday I managed to hang in there till 5:00 then I was just too exhausted to continue. It starts at 11:00 and I'll see how long I can go. It just feels good to be a part of the whole thing even if only by phone.

Still Waiting for Some Good Stuff

It has been 17 days since I had my final Radiation treatment and I keep waiting for things to improve. I reread all the notes taken prior to the start and read the words about having to have patience but I don't think that's in my DNA. Last night was another miserable night with very little if any sleep. I'm sure I kept Nurse R up as well but I can assure her it was unintended.  I even took the dreaded mucous medicine ugh but I don't think it did much good.. I only hope that tonight will be better. I was forced to change the battery in the scale as it ordered me to do so. I think that's what BATT LO means. Batt LO is gone but but my weight has dropped a tad down to a fighting 168.2 lbs. At this rate all my old clothes will fit me but I'm certainly not trying to accomplish this.

Elise called  and a phone has been set up so that I can at least hear the presentations. This  is good.  I finally gave up the ghost at 5:30 and got up. Today will be better. More later

Bad Day at Black Rock

Actually bad night a t black rock. Last night was horrible. I was up the whole night, Nausea, dry heaves stomach cramps, all sorts of fun things. At 5:15 when I thought death was imminent, Nurse R rose from her bed and took me into the kitchen where she fed me some horrible pink medicine. This may have helped. I returned to bed and finally arose ar 8:15 ready to face the day. The mucus is pretty bad but the horrible pink medicine may have thinned it a little. I have been todl I will have three more doses today.

This coming week is the PGW sales meeting. I asked my boss if she could wire me in so that at least I could be a semi active participant. She was going to check and get back to me. I really would hate to miss the whole thing as there is just so much that you can't pick up elsewhere, even with all the reading.

I have just concluded my morning feeding. Yum, and now I am going to get dressed and face the day.

Best Laid Plans

Yesterday I decided I would start the big eating experiment today. I did not have my 6:00 feeding as I was nauseaus and just didn't want any. I felt today I would try solid food. Breakfast I tried cereal FAILURE. I then tried a strawberry smoothie with strawberry soy ice cream and protein powder. FAILURE. There was no taste and it didn't even feel good in my mouth. I am now concerned about my taste ever returning. I'll experiment with a few more recipes and see if they bring any success. Nurse R is disgusted. I can't blame her as I  am as well. She left in a cloud this morning as she has the day off. She needs it.

Rest of the day was uneventful and it is now Friday. Two weeks since my last treatment. My mouth os still sore as is my throat.I had another bout of nausea this noon and havn't attempted to eat anything. Nurse R with her uncanny sixth sense called to check on what I had for lunch. I guess I'm having an Ensure.

I am no longer taking the pain patch (I never realized how wonderful that was) So, now I have pain but have not taken any medication as it makes me nauseus. Some days you can't win. Maybe I'll feel better later. It looks like another beautiful day in the neighborhood so I may take another short walk.

Another Gorgeous Day

I am looking out my study window on a magnificent panoply of greens, reds, yellows and greens in various hues. It is Houston's answer to what New England refers to as "The leaf season" I must go out later and witness the sights and smells of the day in person. If only I felt better. This is getting me down. It has been 8 days since my last treatment and I should be feeling a lot better. Still no taste and certainly no appetrite. I had an Ensure for lunch (big whoop) Nurse R wanted me to have a baked potato which I declined. The thought of it was making me nauseaus. On a positive side, my throat is feeling better and my neck is pealing, so, that seems to be on schedule. It's just the rest of the stuff that is depressing me.

My company computer is being diagnosed remotely. It seems all my icons disappeared and none of my files are accessible. I called trhe magic help desk number and a self diagnosis is in place. It's been doing it for 35 minutes and who knows who much longer. I think I'll go out and check out the day. Maybe I'll feel better when I return.

It was beautiful but my mood still remains dark. My computer finished doing what it was supposed to do but found no errors (surprise) I left a message with the help desk to this effect.I'll see if anyone calls me.

Another Beautiful Day

I was rudely awakened by Nurse R who followed through on her threat to have me up and out by the crack of dawn.This speed brought on an immediate attack of nausea which sent me to the porcelain bowl and ultimately back to bed to recover. After I had my breakfast I rested for a while and then got up, checked my emails and had an Ensure for lunch. After which I went outside for a walk mainly around the corner but it was so beautiful I had to spend a little time in the great outdoors.

When I came back in I was overcome with an attack of thre vapors so I decided to lie down for a brief nap.and then got up so I would be ready for Nurse R's return home. Maybe tomorrow will be better.

Just Another Monday

The past weekend proved uneventful. I certainly didn't do much of anything. I have, however, mastered the art of the nap and practiced my new specialty diligently over the entire weekend. Although I say this in jest I have been doing a lot of sleeping and napping. I don't know why I should be so tired but I am. I still have the feeding tube and have been making a little effort to wean myself from it. Food still has no taste and is no longer one of the enjoyable aspects of my life. Did you know that Baby Food tastes like crap? Well, it does. It could be a Marketing Department's worst nightmare. I have discarded the Baby Spinach as it looks like and tastes like Baby poo. (You'll note my scat comments are appropriate to age level at which they are being directed) I digress. I have also added Ensure to my diet. It too has no strong taste but it's in a small can and I can handle it easily. I am still having two feeding tube meals a day

Nurse R has just called to advise it is 12:45 and that I needed to make a meal selection by 1:00. I told her to call me back at One. I will have no more of an idea at that time than I do now. [we call this Stall Technique I ] Now I must seriously check the pantry to see what if anything appeals to me. As I suspected, nothing. Drat, there's the phone. Amazing how time flies by when you're having fun. I shall have a chocolate Ensure for lunch. Doesn't that sound yum?  Maybe I'll bake some scones; then after that it will be nap time again. . Yes, time does fly by.

D- Day Plus One

Hard to believe but it was one week ago today I rang the bell and celebrated my return to the real world. That celebration may have been a tad mature as I am still waiting. It takes longer than I had imagined for the side effects to leave. I am still on the feeding tube but made the decision to wean myself from it this week (or next) It will take persistence and not any delicious morsels coming from the great iced box. I will start  experimenting and reintroducing the idea of actually eating to my throat and stomach. Today I had a small portion of my cereal which still remains tasteless but I know that will be trhe case for awhile. I may have a Ensure for lunch. This is one struggle I think I can win. The throat still hurts and the stringy mucus is still there but there is a hint it may be improving slightly. I'm hoping next week turns the corner.

I didn't sleep again last night. I am apparently getting sufficient rest during the day to off set any waking hours at night. It does give one an opportunity to meditate on life and solve various problerms that have cropped up but have been heretofore too difficult to comtemplate. I have also found that problems solved at 3:00 AM
are not solved very well, but I have time.

Looks like another beautiful weekend. I hope to get out and enjoy some of it.

Keeping Tabs on Wednesday

I didn't sleep well last night; this has become a regular thing. I keep waking up almost hourly as my mouth is dry and filled with mucus.Sounds like a contradiction in terms but believe me, it's not. I did a couple of rinses and returned to the bed's sanctuary. Today Nurse R laid down the law and and insisted I use the Guafisan which is supposed to curb the mucus. Tastes horrible but I have been taking it. I'll let you know if it worked.

I spent much of the day in bed and then at 2:00 I decided it would be good to get out. I had to have some things printed for my PBG Control Catalog and was off to the Office Depot. It was a gorgeous day and I'm glad I did get out. It feels very wierd missing the sales meeting but I suppose I'll get over it. Maybe I'll start assembling materials tomorrow.

Tonight sleep would e a novelty. I'll hope for the best.

Where did Monday Go?

That's a good question. I don't know where it went as I spent most of the day in a most decadent style, namely in bed. It was actually quite pleasant but last night I paid the piper as I didn't get much sleep. My throat and mouth still hurt and I have all sorts of medicines which I have not benn taking largely becasue they are very short acting and taste pretty bad. How come I can't taste food but I have the ability to taste cruddy medicine? Doesn't seem right.

It's a gorgeous day and I have the feeling I should be out there walking but I have no energy for that sort of activity. Nurse R is becoming annoyed and sees herself as the source of my angst which of course, is untrue. She's been quite wonderful and despite a few feeding errors has handled her new undertaking with aplomb. I keep thinking that things will improve. The various sheets indicate that that should be happing within 2-4 weeks. Although the feeding tube cuts out the middle man it is not the end all be all solution and I hope to be trying oral sustenance soon. Maybe Thursday.

This week is the PBG sales meeting in New York. Actually it's in Jersy City but close enough. I am obviously not there but the sales materials have all arrived and are sitting in my office an very tidy 4 foot stack. I may have to go to the printer to get some things reproduced for my catalog. Maybe today or tomorrow. I'll see how I feel. I even have some orders to transmit so I am not feeling totally useless.Perhaps I'll have more later but then again, maybe not.

Ask Not For Whom the Bell Tolls

Well.....I made it. It was questionable for awhile but I did it. The stent has been destroyed, smashed into a zillion pieces and I can't tell you how much pleasure that gave me. I got to take home my mask. I thought I'd keep it for awhile and ultimately dispatch it to the trash room. I am going to try to insert some pictures in here if I can remember how. If not, I'll call my friend Nicole and she can give me the rundown again.

Dr Beadle, Nurse R and me.                                                  l

                          .

                                                                                   

 Without Neil I couldn't have done it.

I gurss I managed without Nicole, but thanks anyway It was good knowing you were there if I needed any help. I know that it ain't over yet but the soprano is warming up and she can't wait to scream those  opening notes. I look at this as the end of phase one of the treatment. I won't know anything until phase two which will occur in December when I meet with  Dr Weber and Dr Beadle for an evaluation of  the Radiation. At that time I'm sure it will all be perfectly clear.

Bell Ringer

Above are but three of the important people in my treatment. There were many more and so much more that I want to say about my treatment and M.D.Anderson. First that it is an amazing institution where the patient comes first. I've never been to a hospital like this and I hope that I never have to go one again, but it's so good knowing that it is here in my back yard if it is needed. They must issue subliminal training tapes to all their personnel stressing the patient comes first and that it's always the patient. All the people with whom I have had dealings certainly felt this way from the valet parkers (who always remembered my name and always asked how I was doing) to the people at the check in desk to whom I was more than just a number. I always had the feeling that I was not just one of the 90,000 patients that MDA sees in a year but that I was special. Everybody feels like they are special but there it is a reality. This is a hospitsal where doctors are available to the patients, business cards with cell phonne numbers are dispensed and no matter how busy they are, they aren't too busy to see you. Are there drawbacks to this? sure, sometimes there is a little longer wait to see the doctor but knowing that the same treatment is being afforded to other  patients is comforting unto itself. Cancer is the great equalizer and we are all the same and we are all pulling for one another.

Now, I'm really tired and am going to take a nap.

And Then There Was ONE

Today was a very rough day which I managed to get through. I took additional pain medicine this morning as I thought it might help with the stent. Maybe it did but it turned me into a Zombie. Nurse R told me I would no longer be taking the Lortab. Tomorrow is the last day of Radiation. Kinda reminds me of a poem by my favortie poet T.S.Eliot. The line goes"...this is the way the world ends, this is the way the world ends, not with a bang but a whimper."It almost seems anticlimactic but at this point that's all I am looking for. My body really needs to recover from all the Radiation and I am looking for the healing to begin. I had trouble keeping down food today and I hope this improves. It's now time to go to bed. I have been very tired and tomorrow is the Bell Ringing day.

Two to Go

If I didn't feel so lousy, I'd feel good. I can almost peer into the Emerald City, it's that close. Today, as you can tell was not an easy one. I am having more trouble putting the stent into my mouth as I have deep sores on the right side of my tongue. The Techs are great and their patience is almost unwarranted. They all seem to know what to say and when not to say anything. I didn't think something like this was learnable. Tomorrow is the penultimate day and if I can get past that one, I'm practically home free.

Nurse R has been honing her driving skills (probably reviewing in her mind the story she would tell the cop for pulling her over) I'm just grateful for the ride. Today our regular exit from the freeway was closed; had mrs. Foyt been paying attention she would have taken the earlier exit and avoided the dreaded highway 288 which is really a pretty straight shot to the Medical Center. However, to hear Nurse R one whould have thought the route was designed by Satan working in conjunction with the Houston Highway Department. In any event, after all the ranting we were there in 20 minutes.

The afternoon treatment was a fast one and soon we were on our way home. Nothing untoward happened and it was a relatively safe drive.

Feeding timing has been thrown way off and it looks like once again I will only get in two feedings. I will try to ingest an Ensure but make no promises. Now, I'm really tired and may take a shower and go to bed. We'll see how that flies.

The Light is Getting Brighter

Two down, three to go. I had my 8:00 Treatment this AM. felt lousy which is my new way of facing the day, but better than I did last night. I believe I placed second in the Hurling contest. First Prize was captured by Seamus O'Shanussy who downed a fifth of Scotch (Not savored) a pint of Old Granddad (slugged away) and a triple shot of Oso Negro followed by a smidgeon of salted Tequilla and a handful of bar nuts. The Wake for Seamus will be held at Ye Olde Tavern from 6 - 10 Wednesday night. [Where did this come from?] I had the usual problems but was told things would improve in the afternoon. That was fairly accurate as they had no place to go but up.

Today was my last Weekly See. All were pleased with my progress and lauded Nurse R for her tenacity in dealing with an ill patient. She obviously impressed them with her Florence Nightingale skills and the bandying around of such arcane nursing terms as "suppository injection" and "feeding tube ettiquette." I have to stop this as the delirium is forcing it away from me.

I next went for my second treatment of the day fraught with the same problems. However, I survived it and we headed home at 3:30.

I am now into my second feeding of the day and it is 4:25 There have been talks of a third but I shall fight it with my last drop of sputum. Now I am quite tired and really want to take a nap but the tube is moving slowly. Maybe I can get Nurse R to speed it up.

Four More Days!!!!

I really feel lousy today and just looking at that title is cheering me up. I did not sleep well last night and this morining I had a great deal of trouble placing the stent in my mouth. It was pouring and the weather suited my overall mood.  Clicking off the days is the only thing making me feel good. Nurse R managed to get a feeding in before I took to my bed. She headed off to NM but called shortly thereafter to check on my mood which hadn't changed and to advise that I had one hour before my next feeding. It's a vicious cycle. I could cut out the middle man by tossing the stuff in the sink, or the toilet as the case may be. This thought, albeit a good one, did not go over well at all. I think I will now head back to my bed for some well deserved rest. I don't know why it is well deserved , but it is. More later

The End is in Sight

I finished my penultimate Friday at 8:20 this morning. I wasn't horribly sick trying to get the stent in place and things moved relatively quickly. (Just think, one week from today!!!) I've been very tired and today was no exception. I was no company on the ride home and couldn't wait to get back into bed. Oh no, I forgot, I needed a feeeding. That accomplished I went back to bed where I slept on and off until the next feeding time. I'm just so tired with no energy. Maybe I'll recover some of it this wekend as I don't have to rise at the crack of dawn for early appointments. Anyway, that's my hope.

I knew it couldn't last indefinitely and Nurse R called to see how I was doing.(Translation) Have you had your feeding, yet? Why not? Get up and go into the kitchen and get plugged in. I don't hear you moving. I will check back in five minutes. (Time passes) Ring, ring, ring, ring. Hello, who is this? No, we don't want any insurance. Oh, you mean Ensure. We don't want any of that either. Okay, so you're not asking, you're telling. Alright, I'll do it. Ring, ring, ring, Hello. I'm moving slowly toward the kitchen. Ring, ring, ring okay I'm in the kitchen. Where is the Ensure? The refrigerator, my what a good idea. I'll call you when I finish it.Ring, ring, ring. No, I haven't finished that's why I didn't call; but soon, I promise you soon.

And how has your day been?

Double, Double Toil and Trouble..

Today I learned that today would be one of my dates to double up on Radiation. I had my session at 8:00 replete with the same problems, the stent, nausea, etc. but I managed to get through it. I was told come come back at 2:30 for round two. Nurse R was very concerned about my feeding as this second dose was going to cut into my 1:30 feeding. I think she worked out the problem at 3:00 AM as I was told I would have to supplement my feeding with an Ensure. It worked for me and I managed to get it down before I left for MDA and the afternoon session. Immediately upon returning home I was placed in the feeding chair and  it started. What fun, you can't imagine.

Six days and eight more treatments to go. We met a guy in the waiting room this afternoon who was just starting. I was feeling very good and quite superior until I met another man who just rang the bell. We learned he was indeed, Mr. Macho. He took no pain medicine and had no feeding tube. Of course I didn't get to talk to him, and his brain may be mush, but that's quite an achievement.

I really feel whipped, my office looks like a sty (I thought maybe I could get Sally to clean it up for me, but that fell on deaf ears) Maybe this weekend...Now I have to take a nap.

Over the Hump Day

Wednesday's can be either good days or bad days depending on your perspective; it all depends on what you accomplished Monday & Tuesday and what you have left for Thursday and Friday. It is the perfect ambivilent day; my kind of day. I could have started with a poem like, "Eight little birds seeking to get to Heaven, one sat on a high voltage wire, now there are seven." Eat your heart out, Agatha Christie, I can do this too.

It was another rough day with the stent but apparently what Dr. Chambers did to it alleviated some of the problem and I was able to get it in place. We were told that next week will be my last week for Radiation and they will double up on three days which means I will show up at 8:00 for my normal session and return six hours later for part deux which will focus on the right side of the neck and the tumor that used to be able to be felt. Dr. Beadle came out to visit with us and told us that after the Radiation it would take 2 to 3 weeks to start seeing some improvement and that by Thanksgiving I should start to feel much better and hopefully the feeding tube can be removed.  Dr. Beadle said she enjoyed meeting Julie and could see where she comes by it. I guess I didn't know I had such a powerful impact. on my daughter.  Now I'm tired and must take a nap.

Nine Little Bugs Sitting on the Gate, One Got Zapped now There Are Eight

Moving right along. Today's treatment was not any easier than yesterday's. The stent is the real problem, I'll mention this to Dr. Beadle and see what she has to say. Last night was fairly bad. I did manage to get the entire feeding in but at what cost? I vomited up about a third of it thus exacerbating the pain in the back of my throat. Not good. I was very tired so I called it a day at 9:30 PM. Today I felt a little better but encountered the same problem with the stent. After we returned home I had my first feeding of the day. Yum!

Sally went to work but felt secure that I was in the capable hands of NRIT (Nurse Rachet in Training) who will heretofore be known as Minime. Talk about cut from the same cloth!! Amazing. Even the speeches sounded identical. Dr. Beadle was happy to see me. I introduced her to NRIT and there is no question that she understood where it came from. She diligently took notes as I believe she has a telephone exam after today's session. Dr. Beadle said I was doing great, hadn't lost any weight which was good, and the throat looked like it was supposed to look (Horrible) She called Dr. Chamber's offfice and sent me there to see if he could make some kind of adaption to the stent to make it more user friendly. I'll see tomorrow if it worked.

The nutritionist was concerned about me not having seven cans of formula. I explained that I was unable to keep it all down and that I have been vomiting up some of it. She seemed more concerned about volume as opposed to quality of life. Dr. Beadle told me that If I felt the need to vomit I should open the valve and release some of the food. She said the vomiting is not good. She also told me I should continue taking the Senokot but I could cut the dosage back to two. Minime was busy pointing out all the people in the waiting room that had bottles of water. I noted that I had seen them. So, some of the actors may have changed but the play was the same. I guess same time tomorrow.

Nine More Days

That has a nice ring to it. I have settled in with the feeding tube and although it is cumbersome it is a lot easier than eating and drinking in the normal way. It's not much fun but then again, food has no taste so what's the difference? I started off with my morning dose of Nexium and we headed to MDA for my treatment. The good news about being off for the weekend is I'm of for the weekend; the bad news is that I have had a chance to recover and not put that horrible stent in my mouth. This morning I had a real problem with it as I just kept on gagging and gagging. Even the spray was making me nauseus. Ray, the Radiation therapist, has the patience of a Saint and I finally managed to get the stent in place and we got started. Another day, down.

Once home it was time for feeding #1. These feedings take an hour and a half and there is a fair amount of work involved. Nurse R stayed for the entire procedure and then after securing my promise that I would do all the steps involved in the next feeding, reluctantly left for NM. I know there will be many calls leading up to the start time and during the actual feeding. Did you know that Nurse R has a new title? Yes, she is now Food Komisar #1. This is a very prodigious title and with it comes the responsibility of managing the food apparatus and all supplies connected with it. There is also a sub title which comes with this position and that is FI#4 the details of which I shall not delve. Suffice it to say there are very few who have the capabilities or the desire to maintain this position. Huzzah's to her.

I think I may take a nap before my next feeding. I'm quite tired as I didn't sleep well last night.

Yippee It's Friday

This was a rough week and I'm glad it's over. I had my Radiation a bit later this morning as I had an appointment with Dr. Dekovich at 11:30. He was gong to check my feeding tube to make certain all was functioning well. It is and he said that I appear to be doing well, nutritionally speaking. Nurse R was beaming the whole time as if to say, "nourishment doesn't come easily and it's because of my tenacity that he looks so good." That's true. I have also noticed that I don't need as much pain medicine and the pain patch seems to be handling it quite well.

I once again had a problem with the stent but the new numbing medicine seems to help and now #19 is in the record book. Dr. Beadle came by to visit us in the Radiation waiting room to see how we were doing. I think Sally is worried about her as she doesn't seem to have a life beyond MDA. After this and before Dr. Dekovich we went for coffee, Sally had coffee and I visited with Jim, the volunteer  who visits with everyone in the coffee area.

Having finished with our various appointments we headed out. I had to get home as I promised undying fealty to the mistress of the feeding tube and all that it entailed. Two hours later and totally bloated, I was allowed a respite, but I know it's going to start again in ten minutes.  I wonder where the overflow goes when the stomach is full? That would be a good question for Dr. D.

Two full weeks to go!!!

The Feeding Tube is in Place

Today was a rather long and unpleasant day. We arrived at MDA at 6:15 and was ushered into a cubicle where I was given a gown, you know, one of those garments that is open in the back to make your stomach more accessible; a small pair of skid proof slippers that covered half my foot and a shopping bag for personal items. The good doctor came in and told me a little more about the procedure, answered my questions (I didn't have any) and said he would see me in the operating room. He did and next I knew I was O-U-T. Probably the best I've felt in three weeks.

I woke up in the recovery room (It was the same room where I started) and proceeded to get dressed. Nurse R was there armed with notebooks and a working pen which she used to take copius notes. The dietician came by and showed us how to work the feeding tube. I'm sure it's easy but it looked pretty involved and complicated. As long as Nurse R has it mastered, I'll be okay. I was given a half of a can of formula and the tube was put through it's paces. It seemed fairly easy. From there We went to Radiation. We were told that supplies would be brought to us. They included 24 cans of formula, assorted constipation medicines, mucus disolving medicine and other assorted potions.

At Radiation, I had a severe problem not the least of it was the pain associated with the placement of the tube. The real problem was as it has always been, putting the stent in my mouth without getting sick. I couldn't do it so I went up to see the doctor. I didn't see her but I did see her nurse, Sherry Garcia who fixed me up with another numbing solution and accompanied me back down to Radiation. After several attempts I was able to get the stent in place and got on with the daily treatment.

Sally returned with a wheelchair holding our drugs and feeding supplies. I walked to the valet station and the car. I was nauseous and felt lousy, but I was going home and that was good. Twenty minutes later we were home and I was ensconced in my bed with my red blanket. ...but not for long.

It was now time for a feeding. As easy as setting up seemed in the hospital was as difficult as it was at home. I thought Nurse R was going to lose it but she came around and embraced the task.(Well, maybe that's a little generous) Through process of elimination we figured out how to do the feeding and take some medicine. It certainly beat swallowing but I also know that swallowing is in my future. So, I'm set until the next feeding.

The hospital or food service brought by the next weeks supply of formula and the plastic bags with which to dispense same. Apparently this is all submitted to my Insurance Company as I was not presented with a bill. My kitchen counter is now a miniature drug emporium. I don't know what it's all for but I'm certain I have some splendid mix and match opportunities. Tomorrow will mark the end of Week III and treatment 19 and then I have the weekend in which to recover.

Half way there

I'm sure today is a momentous one as I have passed the half way mark in my Radiation treatments. The mind wants to celebrate but the body feels like crap. All that and I just had 5 hours worth of IV fluid. I had my  Radiation appointment at 8:00 this morning and after that I met with the anesthesiology department who reviewed their plan for tomorrow's feeding tube insertion. I told them that as long as I was "Out" they could do what ever they wanted and they should wake me when its over as I have a Radiation appointment at 8:00. After that appointment we headed for the 5 hours of IV therapy. I tried to sleep through most of it and Nurse R was most obliging. I even made an effort to have some soup and a little chicken salad. The soup tasted like liquid dust and the chicken salad like a hardened variety of the same.I am now at home where I plan on doing a rinse, taking some pain medicine and a nap. Maybe I'll be more enlightened tomorrow.

Zombies Are Coming

Bad Weekend Followed by A Worse Monday

Now, doesn't that sound cheery? Alas, it's true. I think I spent most of the weekend in bed coming out to see the Astros lose their final game of the season and the Texans unable to pick up one lousy yard to tie the game. I was taking the pain medicine every four hours and that kept me pretty much out of it. My decision to have the feeding tube was a good one as I had very little to eat, my swallowing is extremely difficuly and even Nurse "R" was able to see this. The told me it was going to be rough and they were most cetrtainly right.

Today, I took my pain medicine and we were off to Radiation. I had another problem once there as I was unable to put in the stent without gagging. Neil called Dr. Beadle and she sent some some tongue numbing spray which was supposed to help. It said cherry flavor but had the distinct taste of motor oil. Now, how would I know what motor oil tasted like, you may ask? I don't, but this was my best guess. Four sprays later and I was able to insert the stent.

After that was completed I met with Dr. Beadle who gave me prescriptions for pain patches, suppositories for nausea, (the Zofran doesn't seem to be working and I just picked up my second prescription which is non-returnable) and liquid medicine to prevent constipation. From there we went home where I took to my bed. I just got up and saw my shadow Oh, oh 14 more days of Radiation.

My upcoming week is very busy. Tomorrow I have Radiation at 8:00 and IV therapy for 5 hours. I guess I'll do this until the feeding tube, which will heretofore be known as a peg, is inserted on Thursday. Wednesday I have Radiation at 8:00, meet with the anesthesiologist at 10:30 and then have IV therapy for 5 hours after that. Thursday I check in at 6:30 for the Peg at 7:00. I go to recovery at 7:30 and on to Radiation at whatever time I recover. All in all, it's a very full week.

I also see on my schedule that I have a CT scan scheduled for December 15th. so, there is light at the end of the tunnel and hopefully it's not another train. Nurse R has been very understanding and although out of love she is trying to foist  fluids upon me, realizes that I just can't take them. I pointed out the activity in my mouth and she now has a very clear idea of what I am complaining about.

Perhaps tomorrow will be better. Naaah, no way. well, Maybe!

Rough Night and Decision Made

Last night was pretty bad. I didn't sleep well and my mouth and throat really hurt and I couldn't swallow. I did several rinses which helped a little but it wasn't good. It reminded me of that old story about a man who was really feeling down and depressed when a voice came to him from out of the blue saying, "Cheer up, things could be worse." So, he cheered up and sure enough, things got worse.

At 6:00 I took a full dose of the pain medicine. Wow! I felt like a Zombie but at least I was able to swallow and it really did help with the pain. I had a yogurt and an Ensure for breakfast, neither of which could I taste but at least I got it down. Nurse "R" was very sympathetic and drove me to my Radiation appointment as I was certainly in no condition to do so. As a reward I finished my bottle of water. Ugh, horrible.

The Radiation today was most onerous. I had a lot of trouble putting the stent in my mouth, it made me want to hurl and that would have been a bad thing. Neil was very patient and told me to take my time and eventually I was able to do it but it was touch and go for a while. I am off for the weekend and hopefully I will be able to recover a little and maybe get some sleep. My energy level has certainly dropped and although I want to take my walk it is a question of the mind being able but the body not. I think I shall now take a nap.

I am enough of a realist to know that this is just the start of the pain and as it progresses, despite the ministrations of Nurse "R", there will be a constant battle over food and nutrients. It's a lose, lose situation therefore I have opted to go the feeding tube route. I called Dr. Dekovich's office and his nurse returned my call. I told her that I wanted to set up a time to have it done. She said she would send out the necessary emails and will call me on Monday. So, I'm guessing it will be done maybe Tuedsay or Wednesday. It's not what I wanted but it is the only sensible choice. I sound so mature I can't stand it. Waaaaaaaaahhhh.

Another Day in the Life

Last night I had my best night in terms of sleep. The pain medicine really knocked me out. This morning my mouth felt worse and the throat is quite sore. Hmmmph, another day.  I had some yogurt for breakfast but it had no taste. Nurse "R" is going to accompany me today because after my Radiation I am supposed to meet with Dr. Weber. I feel certain that I will learn nothing from him, but it's good to have company.

The good thing about the Radiation today was that someone got to ring the bell signifying the completion of the Radiation course. We all applauded her and probably all of us were thinking, "I wish it was me." Only 20  more zappings and I will get to ring the bell.That's the day I'm looking for. We then headed to elevator A and my appointment with Dr. Weber.

We checked in at the 10th floor and waited for a short time to be called. Prior to meeting with Dr. Weber we met with his nurse, Patricia. She had a few words of wisdom, like "It will get worse before it gets better" and how I must keep up with my neck exercises and my swallowing exercises. Nurse "R" said that I didn't have any swallowing exercises. Patricia asked me if I had met with a swallowing person and I said I met with a Miss Lovelace yesterday. Nurse "R" became unglued as Patricia was trying to find a report from Miss Lovelace in the computer. She would have kicked me had she been closer and was sending daggers in my direction. I thought it was very funny and I take my humor where I find it.

Dr. Weber joined us and added very little to the bank of knowledge. He was unable to feel the tumor in my neck and thought that was very good. Sally mentioned that I was not taking thre Erbitux but Dr. Weber was unaware of this. He said it was borderline as to whether I would benefit from it and that Radiation should do the job quite well. He said he would see me in six weeks for what I imagine is the first of many follow-ups. At that time they will do another CT scan to determine the success of the Radiation. That meeting having concluded, saw us on our way home.

I promised I would have something to eat when I got home and being a man of my word, I had an Ensure mixed with half a pint of soy ice cream and a scoop of protein powder. It looked like one of those old fashioned milkshakes you used to get at the corner drugstore but unfortunately was tasteless. I guess I now have to imagine what things taste like as the taste buds no longer function.

At 2:00 Nurse "R" called to see what I was having for lunch. She correctly asserted that I was napping but it was now time for sustanence. Her brilliant idea which I enacted would have won a Blue Ribbon in the "Most disgusting soup ever made" contest. It is made by taking three really good things and combining and heating them. Herewith is the recipe for what I call Green Slime Soup. 1 cup of Kenny & Ziggy chicken soup, 3/4 Twice baked potato and a handful of spinach leaves. Place in powerful blender and turn on high for 1 minute until liquified. That's it. How did it taste? How would I know. I wonder what ideas she'll have for dinner.

Moving Along

Today I started with my new plan to stay ahead of the pain game. I did my swish and swallow and had a strawberry Ensure for breakfast. This was followed by my first dose of Loritab, the pain medicine. This works very well and I only took half a dose (1 tbs) I was feeling okay when I left for my Radiation.

I had a conversation with Dana, my Radiation Therapist and she once again stressed the importance of proper hydration and nourishment. I told her that for all intents and purposes I was on a liquid and pureed food diet. I told her I tried to eat a protein bar but was having a great deal of trouble swallowing it. She suggested I put it in the blender and add some soy ice cream. I thought this was a brilliant idea as there are 26gm of protein in the bar. After the Radiation I had an hour before my next appointment so I went to Cafe Anderson where I thought I'd try the scrambled eggs. They tasted like rubber but I did manage to get them down. I also finished my first bottle of water and eagerly reported the latest ingestion to Nurse "R".

My next meeting was with the speech therapist although her official title is "Board recognized Swallow Specialist." At this point I could make some comment about Linda Lovelace but I won't. Anyway she stressed the importance of  swallowing and not allowing those muscles to atrophy. I told her I was basically on a liquid diet and she said that most neck and head patients usually are as they approach the last few weeks of their treatment. She said she would see me in a couple of weeks. Don Vold came by to see how I was doing and if there was anything he could do for me. I told him I was hanging in there.

Having covered one end of today's events I am now waiting for part deux, the Bowel Management class. I will have more information after it is over.

Enlightening would be the way I describe it. We were greeted by Annette Bisanz and given handouts upon entering the classroom and then saw a 30 minute film on bowels and how to keep things moving.  Annette, who also narrated the film  was excellent and really took bowel movements to a new level , as well she should. I left at 12:00 and stopped off at Walgreen's to pick up my new fluoride prescription. The new one should be much better as it is brushed on as opposed to using trays. That's it for now, I'm going to take my pain medicine and a nap. Maybe I'll have a bowel movement, Annette would be so pleased.

Welcome to Hard Times

I say we got trouble, we got trouble right here in River City and that trouble starts with P and ends in N and that trouble is P-A-I-N. Wow, it hit yesterday with a vengeance. My mouth is hosting a party; mouth sores, throat sores and stringy mucous. If you think that sounds disgusting, think about it being in my mouth. Aw shit. Shit, shit, shit, shit, shit. That sums it up. By the way, shit is a great word, it covers most parts of speech and expresses every human emotion. If this troubles you, then tough shit. But I seriously digress.I have some real pain. However, I do have an arsenal of medication with which to deal with it. The most troubling thing is that it just started and it is here for the duration which means FOUR MORE WEEKS! I'm a wimp. What more can I say?

The pain visitation occured yesterday around 12:00. The niggling thought turned full fledged and I don't deal with pain well. I had a little lunch, a bowl of soup and that was about it. I struggled to get down two bottles of the dreaded water and decided to do my fluoride treatment as at least I wasn't nauseous. Things did not improve and by dinner time I had a good idea of what I would be in for. Nurse "R" was at work so I had a shake for dinner. Chocolate Ensure, half a pint of soy ice cream and six large strawberries. I didn't need the strawberries as they added nothing.. I managed to get down another bottle of water and that was it for the day.

Last night I had thoughts of suspended animation and re-animation but decided it wouldn't work, so I plotted my strategy for dealing with this problem. I may be a wimp but it is NOT going to defeat me. I have my swish and swallow throat numbing elixer, my pain medication and my anti nausea pills. I figure as long as I can take sustenance I will be okay; that and water.Ugh! So, that is my short term goal.

Now I have to get dressed for my 8:00 appointment with the Big Zapper. Day number 11 is about to start.

I have just returned from my 8:00 Radiation appointmnet. Today they took placement X-rays to make certain I am in the right position on the table. I am. I was also given my new schedule and I am finished on 10/30.This means double doses on the 27th, 28th and 29th, but come Friday the 30th I will be done, medium well, but I'll take it.

I had my meeting with Dr. Beadle and she told me I was right on schedule as far as the side effects were concerned. She also told me what I had already suspected, that it would get worse before it gets better. She said I should probably start taking the pain medicine by the end of the week. She also said I would graduate to a pain patch which delivers the medicine without any intervention from me. It's good to know that when you are feeling poorly its going to get worse. That really made my day. I stopped off on the way home and got some chicken noodle soup sans chicken but it was practically tasteless. This is also not a good sign. I called Dr. Chambers, the dental oncologist and told him the fluoride was making me sick. He was really great, he apologized for that and said he would phone in another prescription for a different fluoride treatment to my drugstore. The doctors there are really accessible and they seem to care about the patient's comfort or lack thereof. I think I'll do a rinse. Why is it that I have no trouble tasting that?

Week Three Starts

I didn't suffer too many side effects over the weekend and that was good. Sunday night I was really nauseous so I finally took one of my Zofram at 11:30 and that did the trick. I was up at 6:15 and off to my Radiation treatment at 7:15. I noticed I have some sores at the base of my tongue but so far nothing I can't live with. The rinses seem to help.

This is a pretty busy week in terms of appointments but then I settle into regularly scheduled visits, ie Radiation and the Weekly See. Tomorrow I meet with the speech therapist at 9:00 and then I go home only to return at 1:00 for the Weekly See. Wednesday I have the famous bowel management class (I'll be sure to take notes) and on Thursday I have a meeting with Dr.Weber after my Radiation. After that nothing seems to be scheduled but that can change.

So, at the start of week three I feel pretty good but I suspect that the promised side effects will visit me this week. I'm going to try to do the fluoride treatment this morning as I am unable to do it at night. Just the thought of putting those trays in my mouth makes me vomititous. And on that happy note, I'll sign off for the day.

Week Two Ends

Nine down and twenty four to go. I'm still going uphill but I am nine days into my climb. I had my appointment at 7:15 this morning; the good news is it's really a great time as threre is no traffic, nobody is there and I sail right through my Radiation treatment. The bad news is that it is at 7:15. Next week I'm back to 8:00. The Big Zapper does hit me ten times in various places and it seems to be working. I can barely feel that nodule on my neck so I guess that's good.

I have noticed that I feel pretty good after my treatment. Perhaps that is beacuse I am finished for the day, but I'll take it. As the day progresses I start to deteriorate as side effects start to manefest themselves. Yesterday afternoon I really felt run down and and had that niggling sensation of an impending sore throat. I also noticed the white spots on my tongue but they didn't seem to bother me. The nausea is still there and I have been taking my Zofram which seems to work so I will continue taking it until my morning sickness departs. My appetite has also gone south but I am finding various subtitutes for calories. I made a vanilla shake yesterday using soy milk, soy ice cream and a big spoon of protein powder. It was pretty good. Today I will make a strawberry one using strawberry Ensure and I will also add a few strawberrys to make it more authentic. Drinking the water is still a problem but I have had soup, tea and other liquids. I have also noticed that my energy level has dropped. I still plan on walking but my walks will be much shorter and slower. All in all I am in pretty good shape after two weeks.

I picked up my prescription this morning. I had to wait 25 minutes as the pharmacy at MDA opens at 8:00. I have two large bottles of pain medicine which I had the pharmacist go over with me. I asked her how they tasted but she didn't know. I told her she needed to sample some so she could provide reliable fisrt hand information. she said nobody ever complained so I took that as a positive. While I waited for the pharmacy to open I had a carrot and raisen bran muffin and a cup of tea.

I figure I have a few hours before today's side effects kick in so I am going to walk early. I have the weekend to re-energize and I need it; so, I'll sign off for now and I'll have more on Monday.

I Was Bad

Alas, tis true, tis true. Yesterday was not a good day. I felt pretty good after returning from my Radiation but gradually deteriorated as the day progressed. I had a strong metalic taste in my mouth and and a very queasy stomach. I should have taken the anti nausea medicine immediately but I didn't. (That won't happen again) So as a result I didn't eat very much nor drink a lot of fluids (fluids=water) I also didn't do the fluoride treatment as I knew I would have thrown up. Fortunately I did not give any of my doctors this blog site so what ever I say here will not be held against me.

This morning was a little better. I did not have the queasy stomach so I had a bowl of cereal, soy milk and a banana and I also drank a bottle of water. I'm just trying to stay ahead of the curve. After my Radiation I dropped off a couple of prescriptions to be filled and will pick them up this afternoon after my meeting with the Speech Therapist.

Immediately upon my return home I took an anti nausea pill to ward off evil spirits, so I'll see if and how it works. Now I am going to attempt to do a little business for PGW but will have more after my visit with the Speech Therapist.

I decided to find out where the Speech Therapist was located so I went to My MDAnderson on line to check out the floor number and lo and behold, my appointmnet was changed to October 6th. I guess I have to check the schedule on a daily basis in order to find out what treats are in store for me. I called to find out if in fact the appointment had been changed and was told the Speech Therapist was ill, and it was. It's a good thing I checked because I would have been mighty annoyed had I gone down there and found that the appointment had been changed. Tomorrow I will have to pick up my prescriptions I left at the pharmacy.

That Nausea pill seems to work and I had a bowl and a half of soup for lunch and 8 crackers, so that's good. Also no new side effect symptoms have turned up; I'll continue to hope for the best. More tomorrow.

Over the Hump

It's Wednesday so the week is moving along. I had my seventh treatment this morning, only twenty-six more to go. It is very quiet at MDA at 8:00 and no one else in the waiting room. During my treatment I noticed that the machine (which heretofore will be known as the Big Zapper) makes seven or eight stops and I receive ten doses of radiation. I certainly will have enough time to confirm or deny these statistics. I think the thing I hate most about the Radiation is the stent in my mouth. It's all I can do to prevent myself from barfing which would not be a good thing. The stent may make it difficult to do so, but I believe I could. Thirty minutes later and I was on my way.

I met with the Nutritionist who is really very good. She checked out one of the supplements I have been using, Spiru-tein, and said it was a good one  but probably more expensive than the whey protein supplement which she recommended and which we bought. She approved of the protein bars (26 grams of protein and a zillion calories) and also my diet as it presently exists. She also recommended that I stop taking Vitamin C as it builds up the cells; I can do this.  Another gold star and I was on my way.

So far, so good. The only side effects I seem to have at this time are a dry mouth with a metalic taste and a little loss of energy. I don't know if it is a result of the Radiation or my many nocturnal visits to the porcelain bowl...all that water I have been drinking has to go some place, but why in the middle of the night?  As a result of this diminution of energy, I have shortened my daily walk to two miles but I may have to alter it further.

Tomorrow in addition to my Radiation treatment I also meet with a speech threapist. I'm not expecting to have any speech problems but I guess they like to touch all bases. Maybe I'll slur my words, naah, probably not.

Time for some more water. Ugh!

The Weekly See #2

Last night left much to be desired. I had a case of terrible dry mouth which was not at all pleasant; I even got up and did a rinse. It was as if my salivary glands went to sleep; fortunately this morning they have awakened but I wonder for how long. I know that this is one of the side effects but I was hoping it would occur much later. But enough of that.

Today I'm on my own. The water sheriff is not here and I have been entrusted to drink the 5 bottles during the day. Of course, I will give it my best effort. I changed my Radiation appointment to 2:00 where they will fit me in.The reason being is that  I have my Weekly See with Dr. Beadle at 1:00 and I really wanted to avoid two trips to MDA. This is number two of seven and I'll let you know what transpired when I return.

According to Dr. Beadle I am doing well, maintaining my weight, doing my rinses, drinking the dreaded 5 bottles of water and using the fluoride. She did give me a couple of prescriptions for sore throat and one for constipation to counter the effects of the throat medicine. She just wanted to make sure I had the medicine when I needed it. I guess the bad news is I will need the medicine and the good news is I will have it. Having concluded my Weekly See with a gold star I then headed to Waiting Area J and my afternoon session with good old #97.

I forgot to mention that while waiting for Dr. Beadle I spoke with some folks in the waiting area both of whom have the same cancer that I have. Intellectually I know that no two cancers are identical and the same can be said for the patients so it makes me nervous to equate what I have, with someone else. I know that the one constant is the side effects, the unknown is how my body will react to them. Little tidbits are always picked up along the way and the best advice I was given today was to stay ahead of the pain and not stint on the pain medication. Since stoicism is not one of my virtues this shouldn't be too hard for me to do.

Monday, Monday

So good to me, as the song goes. I feel pretty good today; perhaps having the weekend off from Radiation treatments allowed my body to recover although I suspect it may be more in my mind but I'll take feeling good anyway. The food police foisted an Ensure on me as I left at 7:15 for my 8:00 Radiation appointment. Traffic was light and I arrived at MDA at 7:35. There were no other patients in the waiting room and I went in for my treatment at 8:15 and was on my way home at 8:40.

Upon arrival home I had breakfast, a bowl of cereal with a banana; did my mouth rinses, (which I really don't like) my neck exercises and finished my first bottle of water. (only 4 more to go) I noticed that the nodule in my neck has gotten smaller, almost to the extent it is non-palpable. I guess the Radiation is working. Not too much else to add; more tomorrow.

TGIF

Well, it's Friday and the weekend is almost upon us. This also means that I have had the last of my Radiation treatments for the week and am 10% finished. Best is I am off on the weekend. I am also feeling better today as the nausea was not present. Just having those pills makes me feel better. Thank you for all your suggestions, they are always appreciated.

I had my first appointment with the Nutritionist today. She had lots of suggestions for me and I should be able to maintain my vegan diet. Part of the new regimen includes protein supplements and a lot of smoothies which I should be able to manage. I'm also supposed to drink 2.5 litres of water every day. Sad but true, I'm not a big one for water so  I guess I'll have to mend my ways as there is a new water sheriff in town who makes Nurse Rachet seem like a pussy cat.

Spirits were high in Waiting Room J, everyone loves Fridays. We saw three patients leave with their masks in hand, but before they did a bell was rung and everyone in the waiting room applauded as this marked their last treatment. There is a very warm feeling of comaraderie among the patients and their spouses or significant others as we are all in this together and are one big support group. Cancer certainly levels the playing field.

So, it's four down and thirty to go and I'm off for the weekend. I'm sure I'll have more on Monday.

It's Thursday

I've always liked Thursdays; I guess because the next day is Friday and the weekend is around the corner. It's even better now because I don't have any treatments on the weekend. Today I was on a different machine; it made a little more noise but presumably accomplished the same thing. I'll be on the same machine tomorrow and then it's back to good old #97.

I decided to visit Gary, Dr. Beadle's nurse as I was feeling a little nauseus this morning. I don't think it's good to be nauseous after only two treatments but I was told it is fairly common and was given a prescription for some anti nausea pills and one for its side effect, constipation.

I headed over to Walgreen's to get the prescription filled and was shocked when the pharmacist told me the cost was $104.00. That was for 12 pills. I have decided I will sleep through my Morning Sickness. Well, actually I can't do that because I changed my Radiation appointments to 8:00. Oh well, the nurse did say that the nausea should go away but I didn't ask when.

Tomorrow I have an appointment with the nutritionist. Dr. Beadle told her she would have a challenge since I am a vegan. I'm anxious to hear what she has to say.

I guess I'll go drink some water and do my mouth exercises.

Settling in

Today I met with Dr. Alexander Dekovich from the Department of Gastroenterology. We had a nice visit and he explained how a feeding tube works should I need one. The answer to whether or not I will need one will become abundantly clear as I progress with my Radiation treatments. He told me that it depends on how severe the side effects become and that if I needed one, I would know it. I am planning not to need one but it is good to know I have his cell phone number just in case. It didn't look like a fun procedure but they do give good drugs {If not there, then where?}

From there I went over to the Radiation Center which necessitated moving my car from the Patient Pays Parking Lot to the one with complimentary valet parking outside the Radiation Center. I signed in and meandered through the maze of waiting rooms in the basement until I finally found Waiting Room C where I took my seat and looked over at the other waitees. I spoke with a lady from San Antonio who started her treatment on the same day as I did. There's an old Jewish saying that states, "If everyone took their troubles and hung them out on a line, they would undoubtedly rush back to take their own." I certainly feel that way as there is always someone who has it worse than you.

After I completed my treatment for the day, Neil, Jay and Danna, my Radiation Therapists, advised me that I would be on a different machine Thursday and Friday as Treatment Machine #97 will be out of service for those two days.(I wonder what's wrong with my machine; maybe it just needs an oil change.) The new machine is in Area J; all this after I just mastered Area C. Now I must do my neck exercises, rinse my mouth and drink some more water.

Its Showtime!

I arrived at MDA at 2:45 for my 3:00 appointment with Dr Beadle. This was probably the easiest appointment I will have as it was pre-radiation ergo no problems. I will meet with her once a week on Tuesday afternoons for the "Weekly See Visit" That's what it is called; however I refer to it as Tuesdays With Beth. I had my list of questions, one of which was already answered when I received my new appointment schedule. I will now have my Radiation at 8:00 AM. I can also continue walking outside as long as I wear sun screen and a hat. Much better than the treadmill.

The curtain on Act I of the Radiation Show was delayed because they were running late, so I had my first treatment at 5:30 as opposed to 4:15. It took about 35-40 minutes but I was told subsequent treatments would take much less time. Valet parking at the Radiation Center is wonderful and it is complimentary. At 6:15 I was on my way in the thick of Houston's rush traffic.

So, one down and thirty-two to go. Oh, I did learn that the machine cost $4 million and you have to have a physicist on hand as well as a very competent team of technical experts to operate it.

I started with the fluoride treatment last night and that is an ongoing procedure. Tonight I started with the warm water and baking soda rinses.I am supposed to do this 4 to 6 times a day. I have just been told I must check off my rinses, jaw exercises, mouth exercises and whatever else I am supposed to exercise. It begins.

Dress Rehearsal

Today is the penultimate day before I start for real. We arrived at MDA at 1:20 for my 2:00 appointment with Dr. Chambers, the dental oncologist. He gave me my stent which will be used for the entire 6 1/2 weeks of radiation along with some trays that are to be used for my self administered fluoride treatment which is to be done every day. A five page sheet of mouth instructions was also part of my goodie bag which included a sample of some toothpaste, dental floss and the tube of fluoride. He bade me farewell and said that I would do just fine. (He probably tells that to all his patients)

Next stop was Radiology and the final simulation. That sounds kinda ominous. This is somewhat of a trek as it is near elevator G and we started at Elevator A. No big deal but we always manage to get lost on the return. Anyway, I checked in and was told to go to waiting room C in the basement. We waited a little while and soon the entire team of Techs came out to meet me and introduce themselves. They will be zapping me for the entire length of the program. Then it was on to the room and the simulation.

Sally was allowed in the room briefly to take photos and then ushered out to the waiting room. It took them 20 minutes to do all the positioning for the Xrays and to make certain I was properly placed on the table. That completed they told me they would see me tomorrow for my first treatment.

                                                                   Man in the mask

We mentioned that we would like to change the time to anywhere between 8:00 and 8:45 so we'll see if that will happen. Dr. Beadle's office called and left a message that she would like to see me tomorrow before the first treatment.

Tonight I will finish up the cookies. I have done well...gained 5 pounds on the cookie diet.

Decision made

We met today with Dr. William, fresh from his two week vacation. He articulated very well where we are in terms of my tumor and the options available to me. He said I was offered the experimental protocol of Zactima because they felt it would offer great research value since my tumor was so small and that they rarely see one this size. The Erbitux was still an option but all the doctors involved felt that I would respond very well to Radiation alone. Dr. William also felt that even though they did not have enough tissue to confirm the presence of the HPV virus, he felt the tumor manifested all the signs of it being there. When all the words were spoken, the body language signs read, and every nuance analyzed, I decided to go with Radiation, alone. He said he felt this was a good decision, that Dr. Weber had no problem with this as a stand alone treatment, and we of course knew that Dr. Beadle, the Radiologist felt it was enough. Wheeew.

I then proceeded to ask him about my new problem of hair loss (like I needed this) and he said that it was entirely due to stress and that I had no test(s) that would mitigate this loss. [I know that more will come later and the only person that will be more upset than me will be Ted, my barber]

My dance card at MDA is really filling up rapidly. I have to check the appointment schedule every day (on line) because appointments are constantly being added. In addition to the regular Radiology treatments which will start next week, I also have appointments with my Dental oncologist, a gastroenterologist, a speech therapist, a Nutritionist and the ever important bowel management class. I could certainly make a few scatological comments but I shall refrain.

During my weigh-in I found that I didn't gain any weight so now I'm going to eat a cookie.

I Don't Get No Satisfaction

Some days you just can't win. I have been waiting for a call from MDA regarding my biopsy and whether or not it had HPV in the cells. Yesterday I was called but told they did not have the final results. I was told I would be called today. At 3:30 I had not heard; so Sally called MDA on my behalf and asked that I be called with the results. At 4:30 I was called by the returner of phone calls but was told and I quote, "I think the report is finalized but I cannot read you the results." I asked who could and was told that the doctors were in clinic. I asked that one of them call me as I really wanted to know the results before going into my meeting with Dr. William tomorrow.

At 4:50 the phone rang and it was Dr Sabichi. She said, "I really can't believe this but your tumor was so small there was nothing left from which to perform the test to determine whether or not HPV was present in the tumor." Of course a very positive spin was put on this. Dr. Sabichi told us she would talk to Dr. William before he meets with us tomorrow and give him her thoughts. Now I don't know what to do regarding the Erbitux. My initial decision was to have Radiation only if HPV was present in the tumor and go with the Erbitux if it was not. In chess, this would be a stale mate. So, I guess I will allow myself to be swayed by whatever Dr. William has to say. I'll have more after that appointment.

This Ain't Gonna Be Fun

Friday was one hell of a day. We arrived at Anderson at 8:30 for the first of 5 appointments. It was Patient Education and Instructions. There were 10 patients and their spouses or significant other in the mini class which was conducted in a hallway. Gary, the nurse who ran the program was very good in a very non-traditional way. He really said it the way it is. If one didn't want to hear reality, this was not the place to be. I remember Dr Beadle saying this was the program that would scare the hell out of you and she was right on the money. Yesterday's information sheet with the side effects was merely a precis of what was covered today. I'm not going to go into all that was covered but suffice it to say this treatment is really going to be rough, the side effects are going to be nasty, there will be pain which will be managed and for 4 of the 6 weeks I will be miserable. He also said the side effects do take time to disappear, sometimes up to a year and in many cases they don't entirely do this.  Unfortunately I am not a stoic. However I have convinced myself that I will endure this, I will do all that is asked of me and I will triumph. I know this sounds good but I hope I still have the same conviction as the therapy progresses.

Next on the agenda was a meeting with the entire Radiology team. Six doctors crowded into my little examination room and scoped my throat, probed around and discussed it. This little team consists the best of the best and they exuded confidence. I  was given my radiation schedule which starts on the 21st. That day will be a dry run to make sure my position on the table is correct and the mask is properly marked and they are ready to go. The first actual treatment will be on the 22nd and I will have 33 of them. I am not pleased with the time of these treatments as it is 3:45 PM. It's the perfect time to hit the school traffic coming and the rush traffic going. I will see if I can get it changed to a morning hour.

My last apppointment was with Dr. Anita Sabichi who is a medical oncologist with Dr William. Our appointment was scheduled for 1:00 PM but she was running late and at 3:15 she showed up. The major highlight of this meeting was a discussion of Erbitux and whether or not I should have it. To say that this threw me would be an understatement. I was feeling so good about making the decision to have Erbitux instead of Zactima. You are not allowed to become complacent. I learned that Erbitux has it's own side effects that I had been previously unaware of and which she made perfectly clear.

She went over my non-finalized pathology report and told me they knew the location of the primary site, that I had squamous cell carcinoma, that the tumor was very small as was the tumor in the node. (We knew this) She said that they recently found that there are a group of people with  head and neck tumors that didn't have the major risk factors, (smoking & alcohol use), who had tumors that were positive with the  HPV virus. (human papilloma  virus) She said that as kids we were all exposed to this virus but for some reason some people don't anhiliate the virus from their body and it gets harbored in the back of the throat and the lymph tissue there. If it is there for a long period of time it can cause a tumor. They are not at the point in time when they can treat this tumor differently. However, looking backward they see that people who have HPV in their tumor do a whole lot better than those who don't. Patients who have HPV have a better prognosis, less chance of a reoccurrence and less chance of metastasis.  She said that regardless, she feels I will do well because I have a little tumor and a little lymph node. The results of the HPV test done on me are not back yet.

So, the choice of whether to have the Erbitux or not, is up to me. All I want is some doctor to tell me what to do but it doesn't seem to be happening. So, the choices as I see them are as follows: Behind door number 1 we have Radiation by itself. Behind door number 2 we have Radiation and Erbitux and behind door number 3 we have, perhaps HPV virus in my tumor which would allow me to bypass door number 2 and select door number 1. If this is the case, I have opted to take door number 1.

Dr Sabichi went on to say they don't like to overtreat their patients and that all involved in my case would feel comfortable with either decision. She said that I had to be comfortable with my decision. My comfort level would increase dramatically if someone else was to make that decision.

After a brief trip to Dental Oncology to drop off my radiation schedule and hear about the fluoride treatment I will have to self administer, we left the hospital. It was now 4:30 and time to go home. Did I mention the bloodwork? Yeah, I had that too squeezed in between Dr. Sabichi and Dental Oncology. What a fun day!

Ending on a high note, I was told that I should eat anything I wanted this coming week and to gain weight. I believe this was the first time in my life I have ever heard those words.

Simulation

Today I had my simulation where with apologies to Alexandre Dumas, I was fitted with a plastic mask. This will be used during radiation to focus the beam to the cancerous site. The mask, which covers my head to my chest, is marked as opposed to me being marked. The mask is mesh which allows me to breath although I will also have a plastic guard in my mouth to protect areas that need protection. I signed my release and was given a sheet of paper which listed possible side effects from the radiation. None of them sounded particularly exciting.

Tomorrow is Patient Education and Instructions day. I will be given my radiation schedule for the 33 treatments which will start on the 21st. I will also meet with my oncologist and find out when next week I will receive my first infusion of Erbitux. The count-down calendar starts a week from Monday. I'm anxious to start.

Moving Slowly, But Moving Forward

We are moving along slowly. I anticipate starting my radiation the week of the 21st of September if not slightly before. Thus far I have four appointments next week. I meet with the dental oncologist on Tuesday the 8th. I think he will be telling me what I need to do to protect my teeth, what toothpaste to use, fluoride treatment, etc. On the 10th, Thursday I have a Simulation appointment. I believe this is where I get measured for the mask I will be wearing during the 6 1/2 weeks of radiation. I'll have more about this mask in later posts. On Thursday the 11th I go for patient education where instructions will be given as to the therapies I will be undergoing and I'm sure I will have an opportunity to ask many questions. My other appointment on that day is at the Head and Neck Planning Clinic. I'm guessing that I will be given a calendar which will list time, dates and procedures.

The day before yesterday, an interesting thing happened. My oncologist, Dr. William William (yeah, that's really his name) called. He asked me if I wanted to participate in a clinical trial. Previously I was told that in addition to the radiation I would also have an additional therapy. It is something called C225 or Erbitux. This is a little extra something that is administered by infusion once a week for the duration of the radiation. It is an antibody which is a new type of "targeted" cancer therapy which starves the bad cells without harming the healthy cells. But I digress. The new protocol which was offered to me is called ZD6474 (Zactima) This is a phase one study of a antibody that has been used effectively in treating lung cancer. This is the first time it is being tested for head and neck cancer. It limits new blood vessel growth as well as starving the bad cells. This is administered in pill form and is to be taken daily for eight weeks and supposedly has fewer side effects than the Erbitux.

We all know that there is no such thing as a free lunch and that is definitely the case with Zactima. The pharmaceutical company is AstraZenica and they require a bunch of nasty tests, the keeping of a diary, two years of follow-up study, etc. They do pay for the pills and some of the tests but I kept hearing the refrain of an old song from Tennessee Ernie Ford in the back of my head,"...I owe my soul to the Company Store"

Dr. William told me he would have his nurse call me and go over the information. She did call and did fax over 21 pages of information. She told me that I was offered the last slot in this arm of the protocol and she needed to know very soon weather or not I was going to participate. I needed to have further discussion with Dr. William. He called me at 9:15 yesterday morning. One of the things I really like about him is that he returns calls. I wanted him to tell me what I should do. I even sked the great question I had formulated at 3:05 A.M. "If your father was diagnosed with the same cancer and offered the same alternatives as treatment, what would you as a son and a specialist in the field recommend?" Of course, he didn't provide an answer. He said it was a tough question and he didn't know what he would advise. Riiiight!

I reiterated that he told Sally that my kind of tumor has a good prognosis and that I will get well; that this is one cancer that will respond to treatment very well. He agreed with this statement. He told me he felt radiation alone would be enough to cure me and that anything else was just a bonus, the icing on the cake. He felt the outcome would be good. He said the pros for going into the clinical trial was that the side effects would be milder and that it was a pill vs. an infusion. I kept hearing "I owe my soul to the company store." I finally told him I was not going to participate in the protocol opting to go with something that has been proven. He did say my choice was a good one.

So, there you have it. Another day in the life...