My first visit to a neurologist Dr.M. R. was in July 2004. A prescription for Flexerel was prescribed. After a week I determined that Flexerel may be the source of a very itchy rash on the right side of my neck. I stopped taking the medication and the rash went a way.

The next prescribed medication was given Neurontin.  On  9-13-04  my dosage was increased to 1800 mgs of Neurontin per day.  I didn't think the 1,800 mg was  doing me any good. Pains were still there. I called Dr.M. R. office to talk about  getting off of it.  Instead on 9-24-04 he suggested to increase the Neurontin  to 3,000 mg (5  600 mg pills / day). It still  did not seem to be doing any good. I continued to receive  significant jolts to the left side of my face. I decided  to taper off of Neurontin.  I could not  even get  advice on how to taper off  of the drug from the manufacturer or the DR.  so I could test something else.  I  decided to just tapered off the medication over a 2 week period. But, when I got totally off of it  my pain from jolts came in much stronger than before. I was wrong in thinking the Neurontin wasn't doing any good. I went back on 900-1200 Neurontin and the heaviness of the jolts decreased.

 The TNA  National Conference on Trigeminal Neuralgia   It  consisted of  some long days listening to the very informative presentations  provided by about 50 doctors.  En-route I discovered how true the information I had read about altitude change on an airplane can bring on more  intensity of TN problems. That is true. Pain enroute was excruciating in the pressurized cabin. Unfortunately it was a 1 stop trip. I would suggest  that if you are traveling that you get a non stop ticket.

 November 12, 2004 while I was at the conference I developed a full body rash. YUK   It was not painful. On my return trip I increased my Tegretol dosage the day before and the day of travel as advised at the conference.  It decreased the head pressure and gave me traveling comfort.  En-route the  hearing on my left side  went out at the same time the altitude was affecting my TN pain.  My hearing resumed after a nights sleep but 2 days later went out again prior to the return flight and did not return to normal in about 30 days when  I visited a ENT specialist DR. V  who determined that my pressure was not correct in my left ear and was affecting my hearing. Holding my nose and blowing heavily  with a closed mouth did not discharge the liquid in the ear area.  DR. V did a lancing procedure  which restored my left ear hearing.

On  Nov. 16, 2004 I reported the full blown body rash to Dr. JK. His response was to immediately  get off the Tegretol and up the Neurontin to cover this loss. I really hated getting off the tegretol because it had given me so much relief.  When the rash disappeared  a different  drug  Amytriptyline was prescribed starting with 10mg and increased to 30 mg. The Neurontin was raised  to 1200 mg/day.

While I attended a TNA Houston Support group meeting Jan 30, 2005 I mentioned to the meeting speaker  neurosurgeon DR. WH that I have had for a long time a numbness on the left side of my face. It is the side that my TN is on. I asked him "What is the basis of the numbing?" since I have had  no TN treatment  other than meds.   He wondered if I had had a MRI. I have had several.  He felt that it is something he has not seen in handling over 100 TN patients a year. It could be something very serious. Darn!! Another road block to a cure. Dr. TK's nurse thought that this  numbness is occurring including half my tongue because my brain is getting pain signals from other parts of my head relative to the TN. DR. TK said that an MVD could be done  without any effects from the TMJ. To this point no neurologist or neorsurgeon  had considered that I might have a tumor in the head outside the brain. Why was there no effort to immediately located the cause of the  numbness and tongue burning? A good question but the answer was not the immediate goal. 

If you have facial pain be sure you buy and read  500 page  book on TN called "Striking Back". by George Weigel and Dr. Ken Casey.  $ 24.95 plus shipping from Florida.  I guarantee that if you are having facial pain this book  will be invaluable to you. The book is usually best purchased from the TNA Association. There are 5 books reviews on it including mine.  Click here. In September 2006 Rosemary and I attended the 2006 National Conference on TN. I spoke to George Weigel.

 If you attend a local support group meeting or a national conference you will meet many others with your similar problems and will hear many Doctors speak about the latest research and treatment in TN.  Another book that is very interesting  reading is called "Working in a Small Place" . It is about the originator of the first MVD microvasular decompression, Dr. Peter Jannetta. What a wonderful book on the leader in the TN area.  Both books can be ordered from the TNA at a reasonable price.

As I write this  the left side of my face is  still in a constant burning pain which seems to get tighter as the sun goes down. The left side of my tongue half the time feels as if it got scaled drinking hot McDonald's coffee. The left side of my lip is swollen and has increased in size. I think I sometimes bite it because I can't feel the pain because  it is numb.  I think my speech is affected so I am not as anxious to speak for long period of time as in the past. This is not a good thing when you make your income from sales over the internet.

It has been that way for over several months. I have been receiving  special massage treatments twice a week which involves pressing of the shoulder and face muscles to get them to be more relaxed.  When I started with the TMJ wellness problem I could open my mouth to 1 finger insertion.  Several weeks later I am up to 2 fingers and a little bit. My  tongue still  feels burned. It seems like it is on the left side. I found one article on the internet that mentioned that this could be caused by an anti-depression drug Amytriptyline which I am taking 30mg / day. On 3-18-05 / Dr. K. suggested I drop from 30 to 20 Mg of Amytriptyline.  I do not like this hyper anxiety  feeling which is also preventing me from getting to sleep until  2 or 3 in the morning.

On Tuesday March 22, 2005 I took another MRI at the request of Dr. J K.  This time it was with thin slices as so many recommend. Dr. K  called  that afternoon and advised that there was some excess soft tissue near the lower jaw. This may have some relationship with my numbness on the left side, the numb tongue, puffed lip and very sore jaws when talking for more than 5 minutes. He advised me to see EMT Dr. RP at Methodist Hospital.  Dr.RP decided that the MRI was not very  valuable in determining the pain problems around my neck.  He ordered a CT SCAN WITH CONTRAST for me for Tuesday March 29, 2005 As before,  the left side of my face continues to feel as tight as a drum.  My tongue still burns half the time. Dr. RP thought my head was asymmetrical. Could be a sign of something?  It doesn't surprise me since when I have nothing else to do with my hands they  go to my head  for pain comfort.

April 26, 2005 Rosemary and I  showed up at the  Houston Anderson Cancer Clinic for an appointment with Dr. R.W  The visit took almost 10 hours. Rather exhausting.  The day included new patient registration, vital signs, blood specimen, chest X-Ray/ a review by a Anderson Fellow Dr. N  preceding a visit with  DR.R.W.  the ENT Specialist.  His Initial questioning including concern if there  was a previous medical situation in the head area.  I recalled removal some skin growth on the face but had no recall of when or exactly what as it was a very minor thing. Dr. RW said it would be extremely valuable to know as much about it as possible as it would help to diagnose  the origin of  the existing malignancy.

 This was followed by another interview by an Anderson Oncologist DR. BG who was assigned to review the case. She was about the 6th person that day to ask me about the history of my case. Unfortunately the film and photos I brought in in the morning were still not available to her at the time of our meeting.

On April 27,2005 I returned for a visit with the Radiologist DR. M assigned to me. A resident MD reviewed my case and then DR. M came in and had a few questions for  me.  He was  to advise how radiation would play a role in  my case. Regrettably he also was not able to review the film I brought with me but withheld comments until he could see a new biopsy, ultra sound and the new MRI.  He also was very quiet during the brief exam. Surprise.  A male RN GS who was very medical savvy  said that although DR. M was very quiet he was one of the top 3 radiologists in the country and all 3 are at Anderson.  Good for Anderson. Maybe other hospitals say the same thing about their staff.. Who knows.

 On May 3rd I  met with a DDS Dr. JM in Dental Oncology.  If radiation is used there can be no loose teeth because they could be damaged by the radiation. An Panoramic X Ray revealed that 3 molar teeth will have to be removed if radiation is used.   In addition I  will be fitted with a orthopedic device to protect the tongue in radiation and a cap to assist in fluoride treatment for the rest of my life. This was my first day on Medicare as my  primary  health care provider.  No daily co-pay. Sounds good to me. Just show your Medicare card. That also means you are getting old.
.After the Dental Oncology review I  took a 3/4 mile interior tour shuttle electric cart ride of the giant Cancer Complex to the ACB building. The Anderson campus is awesome. I had another ultrasound of my neck along with a FNA Fine Needle Aspiration (Biopsy) this time guided by an ultrasound computer for  selection of  more cells for the pathologist to study prior to make decisions about chemo, radiation and surgery. Radiologist Dr. J. had excellent bedside manner and made me aware of all that would take place. I signed the proper documents thinking if would be a simple poke in the face. Away he went with the FNA. OUCH!!!
He did all the local area numbing but once the needle hit my left parotid gland I felt the most excruciating pain I have ever felt. It was a long 60 seconds. I am sure they heard me 3 rooms away. Dr. J continued to repeat  compassionately " I am very sorry Sir!" . I described the pain afterward that it was like someone grabbing a sensitive boil on your skin and twisting it in an unrelenting manner until you said "Uncle".

May 4, 2005  I showed up on time at 6:30am at Anderson  for my  4th  MRI. The waiting room had numerous recliner chairs. Viola!  These could be handy.  I think this MRI  was focused on my cheek and throat area.  I asked about the equipment cost of this latest GE MRI. The tech thought this model was  $8,000,000.  I guess it had a few more  gold plated wires than the other models. The process took about a 45 minute process.
 Thankfully the very considerate staff agreed to work me in to see Dr. JM   2 hours earlier.

A breast cancer patient waiting with me gave the highest regards for her assigned doctor DR. LD. That was good news  since  the Dr. LD was assigned to me.   I had separate in-depth  interviews with a nurse and PA. Both were well trained and compassionate.  They collaborated  with   Dr. LD  who then  saw me.  Based on other medications and my  complications he prescribed 2.5 mg or methadone twice a day to start with. Methadone belongs to the group of drugs known as opioids. OH OH.   Opioids are drugs (naturally occurring and synthetic) with chemical structures and actions similar to morphine. I  WILL HAVE TO BE VERY CAREFUL.

 I took my first  methadone  when I got home. Very interestingly enough I noticed about 3 hours later that what had become normal for me of  "Forced Thinking" , changed to "Voluntary Thinking."Decisions just seemed to move easier. It is hard to explain.  I went to bed around 11:30 and slept through most of the night except for a visits the bathroom. Haveing a good nites sleep and being able to think better was a  great  feeling. I thought I should journal it here because I am very capable of selective memory.  I can easily  forget  about what is non essential at the time and then it can be lost forever.  I am finding these notes become more valuable daily as visits with new medical people ask a lot of questions  that require answers with dates.

It will be interesting to see what effect the methadone will have on me.  I will journal it here

My appointment  with  ENT DR. RW was  moved  to be on my  65th Birthday May 10, 2005 1045am. We celebrated singing OH Happy Days Are Here Again." After a hour delay we were thankful to have received an appointment a week earlier than originally expected.  The final fine needle biopsy and ultrasound provided information about my cancerous condition. The tumor in my cheek has deeply invaded a lot of the cranial nerves and tissue of the parotid gland. Surgery is not  an option at this point. It is too large and too deep. Surgery would most likely not remove all the cancer.  Other cases of tumors in the parotid gland  at  Anderson are usually taken out by surgery to be followed by chemo and radiation.

A initial visit was followed by a trip to the radiation therapist DR., M.  Arrangements have been made to see dentist Dr. M at 8:30 May 11, 2005  who will very soon remove 3 teeth that would not hold up in radiation. A 3 week rest will be needed for the mouth to heal from the teeth removed.  This will be followed by schedules with  the Oncologist Dr. BG, the dentist Dr. ___ to make a mouth deflector to save the tongue during radiation and the Oncology nutritionist. A  mouth splint would also be made and test runs will be made with the therapy procedures.

May 13 Visit to Anderson with St. Paul, MN  Cousin Jim Radford . Had cat scan. Had another chest x-ray and blood draw. Anderson  policy is not to accept a chest x-ray more than 2 weeks old. I guess cancer can grow very rapidly in some parts of the body.

May 15, 2005  9:30 to 3pm at Anderson with my brother Dean Nelson from Madison, WI.> Had pre-op  review by  Internal Med Dr. and by Anesthesiologist.  for preparation  for dental  surgery on May 16, 2005 scheduled to start  6am.

May 16, 2005 6am  Showed up at Anderson for oral surgery.  Dr. JM ,a Anderson Dental,  surgeon  was prepared to remove 4 molar teeth  because they were not deemed strong enough to handle  upcoming radiation and chemo without creating many risky future problems. The TMJ forced me to be totally out under anesthesia because I can not open my mouth wider than 2 fingers. Surgery was  a little over an hour starting around 7am.  Anderson starts 30 surgeries at one time. A very interetesting behive of activity.   I remained sleepy after surgery until 2 pm when we checked out and Dean drove me home.

May 17, 2005 Near supper time I complained to my wife Rosemary of a stomach hurting from an inability to urinate.  Rosemary suggested I call Anderson ER. I spoke to a male nurse on duty. The nurse suggested that I come in  and have it checked because by morning I could come in doubled over. I agreed and we took the 14 mile journey to Anderson Emergency Room.

Plumbing not working is something that one should take seriously.   Checks and tests taken included  urine, blood, blood pressure, temperature, heart and  rectum. The evening ended with a catheter to drain the bladder.  Not a significant amount  was removed.  Dr H did not know what could be causing the problem and discharged me. Oh Happy Day.

Their computer connection with the patient records did not allow them to access my medical records from other parts of the campus. That was depressing. They were not able to pull up what pain medicine I was taking for a hard to remember constipation prevention powder. The medicine was  Glycolax also known as Merilax. I left with more pain than when I went in.  Not a good report on Anderson. On arriving home I asked Rosemary to immediately check the computer for Glycolax  side effects. She came up with bloating. I thought I also recalled that on the bottle and sure enough it was there. This problem was probably caused by a real gas.  The logical decision would be to discontinue the Glycolax. I did not take before going to bed and did not take it in the morning. By noon  my plumbing was feeling and operating normally.
 
So now what do I feel like. A bit 't-d off". I feel that the Medical community needs to present each problematic case with  and through a data base Click here to see my research on this.. 

 Prior to seeing the Doctor significant data should be fed into the computer where the computer can ask for more info about specific problem areas which may be indicative of problems arising  out of similar circumstances in its historical data base. Then the doctor can proceed cautiously  looking for all possible combinations which could pull together the symptoms that caused you to be there in the first place. I will write more on my data base page in the future as soon as I have time.
 
May 24, 2005 12:40  I met with oncologist DR. G. Her feeling about my medical status is that I should start with chemotherapy only and try to get any possible chance of the cancer spreading because it is on my neck lymph nodes  on the left and the right areas of the neck.  She received favorable  concurrence from Dr. M.  The previous week  she had met with 26,000 oncologists at a convention. Could be there is new evidence on that therapy concept. Therefore  she suggested that the chemo can start immediately.

May 25, 2005  5:30pm Rosemary  was with me to Anderson Ambulatory Treatment center where over 100 people can be treated at one time. The evening times were more conveniently available.   A great lobby computer video tutorial was available which explained almost every aspect of what was about to be done and why.  Each patient had a private room. After viewing that a few preliminary steps were done and about 6:15 pm an hour of non-chemo  medications were fed intravenously for successful adaptation of the chemo to the body. These  included for me:
Diphenhydramine  50ml (Benedryl) 
Cimetidine
Ondannsetron
Dexamethasone

From 7:15 to  12:15 am I stayed tethered to the IV for the chemo which included 2 drugs for a combination.  It  created maximum effectiveness.
Paclitaxel  500 ML (Taxol, Onxal)
Carboplatin 150 ML

Although tethered to tubes and bags of solution I was able to get up and walk around, go to the restroom, operate my laptop computer and watch cable TV and write. I took 2 good naps during this  6 hour ordeal. The  majority of the nursing staff had 20 and 30 years of experience. Most  were from the Philippines.  They convey a very good serious  and positive friendly attitude.

The next chemotherapy will be 3 weeks later. I guess that there will be requests to come in for a blood count to see  how the white blood cell count is holding up. The white blood cells fight of infections. If the white blood count is lowered by the chemo then the chances of getting things like pneumonia are significantly increase.   Cancer is a fast growing cell. The  Paclitaxel/Carboplatin  chemo combinations goal is to attack the fast growing cells. I am not sure how it really does that. Hair and finger nails are fast growing cells and that is the reason they tend to become detached from our bodies when chemo is present. They do grow back.
These treatments  are to kill cancer in Parotid Gland in  check. This tumor is giving my  my trigeminal neuralgia pain as it presses against the trigeminal nerve. If it lets up will my pain be reduced? 

Saturday May 28, 2005 Post  First Chemotherapy. I have been on the look out for the side effects of my first 5 hours of chemotherapy. Nothing on the 26th. May 27th was a day of deep sleep. Had several super deep sleep long naps so I didn't get much done but it sure felt good.

Tuesday May 31, 2005. No changes. Naps still feel really good. Had some joint muscle aches as well as funny feet feeling yesterday but not so much today. Need to get my blood checked soon to see if white blood cell count is down. No hair loss yet.

June 11, 2005  1105 pm I have just noticed my first side effect of the 1st chemo session.  I noticed a number of hairs on my keyboard.  Then I found out that if I put my hand on my head and just grab what is loose I come up with a handful of hair. Yuk' I didn't think I would get  there but it is for real.

June 14, 2004 I still have some hair. My appointment with my Oncologist Dr. G. showed that my white blood cells are not quite enough to have another chemo pumping session on June 15 so my next chemo will be Jun 17 starting in the afternoon for about 6 hours again as before.

I asked if  information about my rare cancer in the parotid gland would be put into a national data base  somewhere to help someone else.  I was sadly informed that  rare cancer in the parotid gland  would not  be put in a national data base. There  is not enough  money around to gather that information. YUK That did not make me too happy. How are we going to ever find a cure  for these cancers if the $14,697 experimental doses of toxin injected into my body is not recorded  for effectiveness???
 I will also try o think how to promote more data base changes in the national medical community.

 June 17, 2005  4:00 P.M. Needed fresh blood test for white cells at Anderson prior to chemo. They were up to 46. Minimum required for chemo is 40.   4:30 pm Prepared for 5 hours of chemo NO. 2, 1 hour  4 preventative drugs pumped in body, left arm for effects from chemo. 6:10pm started 2 chemo drugs.  11:20pm left Anderson. No reactions.   Visited with another cancer chemo patient from Arkansas. Instead of a rental car tax to build a stadium they have a Hamburger Tax to build something. I wish there was a tax to aid researching cancer through a Cancer Data Base available to all.   According to a 2002 study (the most current study available), 476,009 Americans under the age of 85  died of cancer, while 450,637 died of heart disease.

 Sat. June 18, 2005  8:00 AM First side effect Chemo 2.  Took a nap. Upon waking my arms and hands feel significant pressure as though you were sleeping on them. 

Mon. June 20, 2004 1016pm Side effects setting in. Yesterday , Fathers Day, I took a nap from  4:00 to 8:30pm.  Wow. Lost  a half a day. Today I napped in the morning for 2 hours after unloaded 3700 lbs of a truck shipment. Also this afternoon more naps. Now my bones are feeling like they were over used. Muscles and bones feel as if I ran a marathon without training.  I guess I will blame it on the chemo or old age that  just set in overnight.

Saturday June 25, 2005. Much of the aches and pains have somehow been lost.  Weight is at 152. Goal of 155. Losing appetite and weight are common with chemotherapy. Rosemary lovingly  cooks specifically for me foods she knows I will be able to chew easily and enjoy. She is very sensitive to everyone's eating restrictions and cooks accordingly. Thank you for praying for Gods guidance for me during this medical life changing ordeal.  Thanks  being interested and reading this.
Friday June 30, 2005. Had an appointment with the chief surgeon and head of ENT Head and Neck Cancer. Waited 2 hours for a 3 minute look at and a 20 second feel of lymph nodes on my neck. He thought they were a little bit smaller. I have been eating and sleeping very well. Only used one nausea pill in the 5 weeks I have had chemo in my body. Very few electrical shots.  Most of the electrical shocks went away after the first chemo.  The most recurring pain is in the topographical valley below my lower lip.  Jaw still sore on left side, tongue still numb, jaw opening still just over 2 fingers. Napping still feels great. Future schedule is to prepare for Radiation and Chemo together starting in about 3 weeks.

Nurses advice. " What ever anyone ever told you about eating food in the last 50 years forget it and do all the things you should not do. Fatten up!!! Your appetite will decrease. Your taste buds will decrease. You will not want to swallow food.  Gain as much weight in the next 3 weeks as you can. You want to be able to live partly off the fat that is on you. You will loose weight. "  This was very true. We immediately went to a fast food place and ordered fries and chocolate dairy desert. When we finished I took one dairy  desert for the road and enjoyed every minute of it.  Bring on the cookies and snacks. I am ready. Rosemary is having a field day cooking for some one who has to gain weight. Time out for a snack.

July 11, 2005 Dental Oncology  took tooth mold impressions to make a stent to protect my  tongue during radiation. Actually it doesn't cover it but moves it off to the side from the most common areas where radiation is  entering the body.  Dentist Dr. Ch asked the same old questions about what I am allergic to showing he never read my file before viewing me. A MDA fellow took my impressions. He did a good job in  getting the mold frame in  my hard to open locked TMJ mouth.

This C-T scan was with contrast so Iodine was inserted in to my blood to make the pictures look pretty.  They had to get it around my neck and shoulders so they tie straps around my wrists  to pull my shoulders down. It was a new experience.  I felt like I was going to be catapulted to the next hospital. I was not  on the table for more than 30 minutes. I am sure I fell asleep during some of it.
 
Weight 159 lbs and climbing. 
July 11 . Very few shocks.  Cut neurontin from 1200 to 900 day hoping to decrease constipation problems. For me constipation was the worst side effect and most painful result of any medications.

Tues. July 12, 2005 11:50AM  I  met with Oncologist Dr. BL filling in for Dr. GL  to determine  results of chemo via cat scan and the amount of chemo to be used with radiation doses.  Arrived 11:40  Electronically signed in but at 12:40 clerk said I had not signed in. Won't do that again. It has happened before. The electronic sign in is not perfected.  1:05pm They finally took vitals.

Nurse visits 1:15 to 120 PM. Asks the usual cursory questions.  What meds are you on?  Describe your pain level.
Physicians Asst. Visits 2:10 to 2:20 PM mostly  defending position why I had not been seen by the Dr. for the 11:50 Appt. No Medical treatment provided. She advises that I have available to me a Patients Advocate. She leaves. at 2:55PM Ashanti, the patients advocate arrives. She  stated that she was paged on the emergency network. What's wrong.  Well, It is now 255pm and I still haven't been seen by the Dr. having been here since 11:40 am. 

303 pm  Ashanti says she is in contact with radiologist Dr. M and Dr. B and they still have not been able to  find a radiologist  to read Cat Scan taken 2-11-05 and compare it. They have reached  oncologist DR. G who stated that  she and Dr. B and Dr. B feel the film leans for another dose of chemo and then Radiation after that but they are still not sure.  Good thing I decided not to arrive for the MULTIDISC PLCL/PT OPTIONAL MEETING AT  7AM.  I would be waiting from 7 am to 3:35pm to determine that they are not ready to discuss medical treatment with me.

3:50pm  Dr. B. Comes in  with the patients advocate and defends his position that there was no sense in seeing me until they had some cat scan info.  I would agree but not once did they ever send someone to tell me that and reschedule me and save me of a wasted day. No, it is just business as usual  "Just let the idiot wait. He is just a patient and we are  the important God Doctors"  attitude.

 As predicted I heard the reason we are late  story about another patient who was almost dying and needed the Drs.  help most critically all day long and I am lucky they have such an interest in my welfare. " You wouldn't want us to overlook that patient would you?"

Radiation Dr. at 3: 15.  July 12 Radiologist Dr. M meets with us for 20 minutes at late hour of about 4:30 when almost all the staff had gone or are getting ready to leave. He feels there is progress and encourages us to get the simulation training out of the way  so radiation can start as soon as best applied to reduce the tumor. He thought that the reduced pain around the jaw and few if any electrical shocks was a good sign.

 Thus. July 13, 2005 Arrived at Dental office to pick up tongue protecting stent.  Waited from 11:40 to about 1:40 to see Dr. Ch. Claims a patient that wouldn't stop bleeding caused the delay.  Takes about a half hour to get the make the wax  stent to fit my mouth. Cut Methodone from 7.5 to 5.0 today.  1 pill in am.

Rush down to radiation where they have been advised of my late arrival. Staff very helpful and compassionate. Allowed me to take photos with Treo 650.  Again as in CT Scan arms are strapped down. Dental stent is in my mouth making swallowing of saliva feel difficult but almost gagging. Very stressful. Natural  feeling is to spit it out.  A wet nylon type reinforced mesh is applied to my face. On first try the temperature felt scalding to me. I jolted. Required temp is 162.5 to 165. A small percent can not take the initial temperature.  They had to remake it.  This time they allow the mesh to cool slightly prior to applying it over my face. It worked. Took about a half hour with stent in mouth and arms strapped. Simulation is training is for radiation on my left cheek.  Wax stint  to be converted to permanent material to protect tongue from being burned. I leave parking lot. 5 miles down the road about 5:30 pm radiation head nurse Gary calls me on my cell phone.. "Stop.  Can you please come back? The stent  we made is the wrong kind!" Sure. Why not. No other choices.  YUK. 

Dr.Ch  apologizes for the error he discovered while dictating. Initial error caused by radiation fellow using wrong words in requesting the dental device. His request was not checked by radiation training Dr . Dr. Ch noticed the error on the way home the previous day and told nurse on the way out but when I showed up he forgot what he discovered the day before and made the wrong stent. I leave with the new tongue protector stent now for my left half of the mouth.

I will have to redo the first day of training for the simulation on the scheduled Day 2 and do day 2 then next day.  So it is. A whole day lost in medical advancement. Not much I could do about it.  If another lengthy chemo is used and  the anticipated  possible radiation is not started within 2 weeks a 3rd mask will have to be made prior to the radiation because the topography of the mask may be slightly different. The stent will remain the same..
Thus. July 14, 2005 Simulation 2 moved back to no. 1. Re-did the mask for the revised dental stent.It took about an hour. I took the old one home as a cancer survivor souvenir.  

Fri. July 15, 2005

845am  Simulation 2 BWN to return  wax stent No. 2 to dental oncology to be remolded.

4:30pm. Chemotherapy  Administration  ATC Chair Unit  Elevator C Main Building. We left Anderson about 11 pm with no problems other than 2 extra attempts to find a vein in my left arm  until they were successful on my right arm.

 The time went by fast because I  took a hour nap and played with my new  cell phone..   
Tuesday July  19, 2005
845am  Patient Education Instructions for new radiation patients.  
10:15am Multi Disciplines Planning Conference with patient.  9 Oncology  Doctors in a small room check my mouth opening and feel for shoulder nodules that may have shrunk.

July 22, 2005 Cut neurontin from 900 to 600/ day hoping to decrease having to take constipation meds.. 
Monday July  25, 2005 Last Day of Simulation Training with Molded Nylon Mesh Netting to keep me from moving even a fraction of an inch.
Tuesday July 26, 2005 First Day of Radiation Treatment. Takes about an hour. Nurse had difficulty in getting me out of my mask. It was not her regular machine.  First day of FREE  valet parking. Yeah.  No tipping allowed.
Tuesday July 27, 2005 7:30AM  2nd  Day of Radiation Treatment. Takes about a half  hour. Only 11 minutes of machine time under the locked down mesh mask with dental stent to keep my tongue on the right side. Almost gagging but not quite.

Wednesday July 27, 2005 9:30AM Weekly scheduled visit with Dr. M to review my case.   Must keep my weight up. Appetite will drop. YUK July 22, 2005 Cut Neurontin  pain meds from 600 to 300/day hoping to decrease having to take constipation meds.
Thursday July 28, 2005 7:30 AM
Friday July 29, 2005 7:30 AM  9:30 Mouth has first signs of burning and a beginning desire to be over.
August 1, 2005 First Day of no medications at all being taken. Yipee!!.  Pain shocks from TN have gone. I still can not open my mouth super wide and the tensions are still tight on my left side. Tapered off all meds over the last  month.  Radiation 5 of 33 today. Advise by machine operator that I am given 7 doses each time. Amount of each dose is like a prescription. It is what ever the Dr. orders.

August 4, 2005 Conference with head of Head and Neck Center Dr. W. informed me that I am scheduled for a total of 33 radiation treatments. Cat scan is scheduled 6 weeks after a last radiation.  Then they will review condition of the tumor.
Fri. Aug. 5, 2005 Son Avery from Denver visits Anderson with me for no. 9.  I drive. Appetitie  is nil. Call in for Jenn PA to Dr.W. I hear  my heart beating with left ear in pillow like water dripping in shower..
Monday  August 8, 2005. Rad. no. 10. Spent 2.5 hours visiting pain clinic FasTract.
My Complaints.
1.Body temperature running Hot and Cold.
 2.Appetite is not good.
3.Unable to get to  sleep quickly.
Dr. M Ku Gave 3 prescriptions. ?$ 400 before insurance. Yuk.

A. Catapress TRTS-3 Patches ( 4/box. Advised to use 1 / wk. for 2 weeks. Ingredient Clonindine. The patch for is high blood pressure which I don't have (yet) but it has other medicinal properties Installed at 3:30
Clodine3 Sides Effects that may go away,  drowsiness, dizziness, constipation,  tiredness, headache and dry mouth.. Patch peal off is on my upper left arm,

2. Cymbalta 30 mg capsules by mouth daily for 1 week, then 2/day. Ingredient Seratonin, and Norepinaph  in a rep. take infidirtor SNR used to treat depression or other medical conditions . Side effects, nausea, drymouth, dizziness, draw sings, trouples sleeping, increased reacction to fatique, dizzines, drawines, trouble sleepting, increased sweating/.  YUk,  ALL THE THINGS I AM LOOKING TO PRVENT. SO IT IS.  Ingredient  Selective  Duloxetine.

3. Alprzolom. .5mg tablets. take 1 by mouth 3 times /day. for opioad withdrawl.
Caution. Do no drink grapefruit with Alparazolom. This is  abenzadazepine used to treat anxiety, Panic disorders, Possible side effects to look for:  Excessive dry mouth, drowsiness, unusual weakness, dizziness, light headedness , headaches, clumsiness and unsteadiness. Took all these today. Several hours after supper my anxiety was very high and couldn't to sleep as body was very hyper tense. t

Tues. Aug. 9. Rad. no. 11 Then to blood tests. Then do Dentist Ch. for Fluoride retainers.

August 24, 2005 My brother in law Gil from Minneapolis has been here specifically to help especially me in all the things I have not been able to get done. What a great help and blessing to have him here.  He is learning the chauffeuring  business direct to MD Anderson in addition to all the grunt work outside that Brian never gets around to doing. New fences in the yard make things look great but we accumulated a lot of work that didn't get done when you spend your spare time at the Anderson Cancer Center. When I get over this cancer and visit Gil and Sharon they will probably let me carry out the garbage at least once during a visit. Thanks for your big help here Gil.  I really appreciate it.

Sept. 6, 2005, I started getting my nourishment from a feeding tube today. What a blessing that was.  I  had a feeding tube inserted into my stomach which leaves a small spigot valve and plastic tube with a port opening near the navel  to feed  canned fortified food with about 300 calories per can. It does not go down the esophagus.  I can also insert various amounts of water.

Tues August 9,2005 730 Rad. NO. 11 of 33
 9:00am Blood/Specimen Collection. How does it look. First Impression Very bad Blood Platelets 16,000.Kathleen, PA, and Dr. G said No more Chemo with this rate. Minimum of 100,000 needed to have Chemo. Otherwise blood won't  clot and you could bleed to death. Dr. G ordered a repeat blood test. Could be an error.  Went for a 2nd test and also a EKG.
Wed. . June 11, 2005 Rad . 12 Dr. M concurred. No chemo with blood palates that low.
 Julie  called from Dr. G's office Blood Platelets were really 171,000.  Yippee. Good News So now I am going to take Chemo Friday 9:30  after Radiation at 7:30.Energy starting to slow. Must be meds from above.
Thurs. Rad, no. 12  Returned home 8:30  Stopped at neighbor friend Bobs who helped  me tear down Fence posts. Trying to get him to build a lake in his 1.2 acre back yard. Then slept almost the entire day.
 Friday Rad no. 12 Daughter M will drive me to Anderson dropping me off at the the valet parking first time in free in AM to drop me off. Mostly want to nap today. Have some calls to return. " This will probably be my worst  chemo because  making a marathon run to the bed, kitchen or bath takes effort. Electrical jams are stopped. NO more neurontin.  Good news. Possibly tumor is shrinking.  Eating food is a necessary evil. Pickles and Ice scream are getting closer to being my diet. Must be pregnant.
 
Update 4-10--06 ........Note from  a friend SW. ...........  "For mouth pain which prevents eating l take one ounce of water and put the insides of 2 Benadryl capsules in it, then gargle this solution for 30 seconds and then spit it out.  It will numb up everything inside of their mouth for about 30 minutes.  (Some people report this works for up to 4 hours of pain relief.)  Then the person should be able to eat some soft food or drink enough nourishment to help them out. You need food for energy and will die without  it. I  learned about the Benadryl rinse from a neurologist and a pharmacist.  When I did this, my tongue numbed up for at least 1-2 hours.  I knew then that it really worked! SW"

New posting Sept. 14, 2005,
I have just not been in condition or in the mood to write until now to update this journal. . I went for an entire week with no desire to sit down to read and write e-mail.

Last Friday  Sept. 9, 2005.  I finished  my 33 of 33 radiation treatments. Yippee. I had the usual bell ringing by the staff at the completion which was applauded by the other cancer patients waiting for treatment. I was able to make all of my appointments although twice I had go into radiation with a wheel chair. Too weak on my own. . I had become dehydrated with not enough water and had to have several IV treatments which lasted up from 2 to 8 hours.  Apparently this is not that uncommon as there were many patients in for a similar treat each time I was scheduled to go in.

DR. G has decided the the 3rd chemo was very rough on me.  It was a different than the first 2 chemo treatments which were taxol. The taxol gave me very little side effects.  The 3rd was cisplatin. There was a big effect on loss of body weight and appetite.   About 2 weeks ago I  had a feeding tube inserted into my stomach which leaves a small spigot valve and plastic tube with a port opening near the navel  to feed  canned fortified food with about 300 calories per can. It does not go down the esophagus.  I can also insert various amounts of water.

All pain drugs had a side effect of constipation. It is a major problem and not one to be messed with.  I had my share of problems here. Every time you turn around one of the doctors was prescribing some new medication. It was hard to keep track of everything.  Written records had to be taken. I was able to drive myself to radiation the first couple of weeks but at one point it became necessary to have a chauffer via the help of loved ones. When you are in radiation treatment fortunately they have free valet parking. At all other times it is about a $ 10 parking fee to park in one of the garages for 3 hours or more.I did have to use the half mile away lot when I took my van. I have learned that the initials MD Anderson are better know as "Most of the Day" Anderson because the time spent being checked and meeting appointments takes truly most of the day.

 My taste buds were getting so bad from the radiation and chemo that eating almost anything was painful. Hopefully my desire to eat food will come back and  my throat won't become so sore from eating and swallowing. My tongue continues to have a burning sensations.  My normal mouth tastes as though I had swallowed some gasoline. It could take 6-8 weeks to go away. .  It is possible that normal taste buds would not return.???.......... ever. Yuk.  My head is now bald due to the chemo.

It is amazing how during these taste changes where the site of food is almost nauseating.  My ability to smell things  has significantly increased.  Right now  I would make it at the end of leash in the canine core because I can smell the smallest amount of perfume, after shave lotion or greasy food cooking . Most of the time when my wife starts cooking something I find it more convenient to leave the room. Very few things smell good to me. I was able to down the fortified drinks but it is far more comfortable to take them in the feeding tube.

Next month October  19, 2005 I am scheduled to get a blood test and then a cat scan to see what effect the chemo and radiation had on the tumor in my left check. I will meet with Dr. W. on October 20, 2005 who will interpret the radiologists analysis for me..   Dr. M feels the cancer nodules on my  collar bone don't seem to be there any more but he was never able to feel the tumor in my cheek.  In the interim 6 weeks I just wait and let the radiation and chemo do their thing.

Sept 18, 2005 I was given a new prescription for a pain patch. The insurance company  would not renew it until the 22nd.

Sept. 22  I went to picked up my prescription  at Walgreen's before they closed for Hurricane Rita. Unfortunately  Walgreen's closed at noon even earlier than when they said they would close which was to be 4 pm. .You can't blame them. They had to take care of their family also. Hurricane Rita was expected to be very sever.

  Sept. 23rd we joined a million other Houstonians and evacuated the city in respect for  Hurricane Rita.  We were able to get to Austin via the contra flow lane toward San Antonio.  We were lucky. Tens of thousands of Texans  were stranded on roads  going out of  Houston after driving dozens of hours in 2 mile per hour gridlocked freeways. They ran out of gas or their car overheated and their situation went from bad to worse.  They were forced to stand alongside the road in mid day in 100 degree heat with hundreds of others in the same boat. No gas was available. There was no where to move forward.  Many went back home because their effort to evacuate as directed was a Journey in Futility.     That  was very sad.  The nation learned that future mass evacuation from a metropolitan area had to be rethought.

Sept. 23, 2005 I was NOT able to get my prescription filled  in Austin, TX because it was a powerful C-2 commodity and the original prescription laid in the hands of the Walgreen's pharmacy back in Houston which now was closed for  Hurricane Rita.

I had  been unaware of it  but I had been starting to feel the withdrawal  effects of the medication. During the evacuation weekend I developing more  opiod medication withdrawal  symptoms. My body was going through instant thermostat changes of hot and cold sweating, anxiety and inability to sleep normal up all night going to the bathroom. Because of the uniqueness of the situation there was not much I could do and no way to anticipate the dire circumstances. It was a tough weekend not knowing what might be happening to your property back in Houston and then  not knowing if you would have to go through the same gridlock getting back in town with a million others wanting to leave town about the same time. The experts had not anticipated that voluntary evacuation people took the hints provided by Hurricane Katrina. .  In addition  my  physical body was trying to recover from radiation and chemotherapy. I had noticed a few things about  eating that were less difficult. My ability to smell things favorably was improving.

I picked up my prescription Sept.  26th. This was  followed by a Dr. visit to  the MDAnderson Pain clinic . My health situation began to rapidly turn favorable,

Sept. 27, 2005. I slept well with almost not getting up to go the the bathroom  at all compared an hourly  ritual previously for dozens of nights.  I can not figure out why that is.  Did my bladder change shape?   My desire to eat had increased.                                             b          

This morning  while I had 600 calories  though the feeding tube directly to my stomach I ate orally  2 pancakes, a glass of cold milk, and 3 strips of bacon for breakfast. WOW This food appetite was more normal than I had been in  many months. It felt great.

Later in the day I drank a 12 oz coke with ice to be followed a few hours later with a milk shake.  6-8 weeks ago I could not even drink Ice  water.  I have been losing weight down to 142 lbs,  Now I have hope that maybe I will be able to eat food like the rest of you..

Sept. 28, 2005.  Weight up to 144 pounds.   A 2 lbs increase. Wow.   Appetite holding. Can enjoy drinking ice water today. Couldn't do that 2 months ago. It would burn my throat.

Sept. 30, 2005. Weight up to 146 pounds. Another 2 lbs increase.Water actually has a good flavor now. Can't believe it.! Am eating a little food by mouth with each meal. Have limitations on how much of any one thing I can eat. Continued to eat  a lot of grapes.  Have a little bit of taste. Worked hard at disposing of junk in an all day garage sale at home. My brother Dean and his wife Esther were here.They were a big help.    Many happy customers went to their  home with bargains. Celebrated the day by having my first beer in several months. Good feeling.  Will continue the garage sale until noon tomorrow and the rest will be given away.
October 2, 2005 While attending an outdoor event north of Houston called the Renaissance Festival my feeding tube spigot and the red enteral feeding port fell off and was no where to be found. My sister in law Esther said she had noticed  earlier that my shirt had a big moisture spot on it. The liquids in my stomach had found their way out to my shirt and dripped down to my pants. Another attendee at the event saw  us inspecting the tube  problem and fished out a Band-Aid. We taped over the 1/8 ' hole with the band aid to stop the leaking. It did so for a while but Band-Aid brand had breather holes. We went to ER were 10 ER people in Red Shirts  were waiting for a problem to work on. . They gave me some adhesive tape to cover my open port tube and we were fine the rest of the day. 50 miles away at home we located another spigot and red port provided by the hospital for such an occasion. So a lesson learned.... take along at least a piece of tape in you wallet or an extra spigot and red port. You never know when it might be needed.

Feeding on a tube takes almost an hour for 2 cans, 600 calories. Usually  I hang the feeding bag on a IV type stand I built because my wife's idea of putting it on the lamp was inconvenient. You are tethered to this pole for the duration of the feeding. The feed line has to be at least as high as your head. With a few interested requests to motivate me I will provide a weird picture of the  system I used to make myself total free and untethered from the IV pole. Say what you want. I  agree it is weird.   The bag is clipped to my baseball cap.  The cap is put on backwards. The tube starts down the front over my nose where I can see the drip line at work over my nose  if I become cross-eyed.
 I am able to walk around for an hour doing something during this time consuming period. It sure helps  develop good posture. (You learn not to tie your shoes when you are just learning to use this.) With a little effort I could probably design a safer hat that would not let the food bag with 600 calories of liquid food fall off your head. Be sure to lock the lid on the bag if you ever do this.  Let me know if you have seen a similar system or if you know of someone who has to use a feeding tube. 10-8-05 Added an extra clip on the visor and it worked much better. Not so likely to fall off.

October 7, 2005  Weight up to 150. Great feeling. My skin is not so wrinkled as it was at 142 lbs. 7 cases of "people gourmet food" ... (feeding tube stuff)  delivered today.  Enough for another month. Sort of like buying dog food. Maybe I will be off the tube before it runs out. I hope so.  I will have to wean myself off the tube slowly but I want to get up to 155 before doing so. Appetite is still not great enough to get your moneys worth from an "All You Can Eat"  restaurant. (We as a nation a dangerously heavy. All you can eat should be illegal. )

October 16, 2005  Weight still 150. Eating most everything but appetite is a " I can eat if I have to." Jaw is still about as tight as it was 6 months ago. So.... is the tumor gone?  Probably not gone  but maybe it is dead and just hanging around?  It would be nice to get rid of it. I will let you know on October 20th when the radiologist and head of EMT tell me what it looks like from the Oct. 19th cat scan. I have no idea what to expect. It is what it is.

October 18, 2005 Weight 148.  I don't think the anxiety of knowing the results of the catscan have an effect on me but subconsciously it could. Not sure how to measure it. Not sleeping well. Could be the weaning.  Have weaned off the 72 hour patch, a highly controlled narcotic. During withdrawal my body goes into hot cold sweats.  Must follow docotors orders when weaning off any medication. Went from patch to a liquid pain killer, dilaudid also a narcotic  for easier  weaning withdrawl. Have 3more days to go and will be off all meds except for Nexium. That stuff is expensive. Without insurance  $ 157.00 for 30 tablets.  $ 25 if you have insurance.  Hope they come out with a genereic for Nexium. I guess I will use it for some time for acid reflux which affects the  esophagus and then decreases your desire to eat. 
October 19, 2005 Took single vial blood test today. IT took 2 pokes  for my small veins.   Was the top of the hand OK  for the 2nd? the nurse asked.  Sure. Big mistake. After taking the blood a patch was put on the spot. " Hold this for 2 mins."  It was also taped. I probably didn't hold it for 2 minutes. It developed bruise blood an inch in diameter. The back of the hand is very mobile and hard to keep stationary. Next time it is in the arm only. Took catscan.  Machine period for head neck is only about 15 min but there was an hour wait with a dozen cancer patients in surgical garb laying out on facing recliners. All accepted the nice warm blankets provided. They keep it cold enough so no germ would ever think of multiplying. Put a STAT request for radiologists  to be sure to write report today prior to Dr. Appt. Oct. 20 to review results my next appt.

D Day October 20, 2005.  Welcome to the good news.  From all indications on my cat scan Dr. W feels that my tumor has to be considered gone. They have a way of reappearing so you never know.  Actually there is a mass of something in the cheek.  but the odds are it is dead.  PRAISE THE LORD. 

The body will in some magic way probably process that tumor mass to be exspelled.  Well, the decision is not all that easy.  Doctors do differ with one another mostly because of the fact that they are human and their opinions often are not exactly perfect.  The reading radiologist looked at the catscan and decided it would be helpful to have a MRI. Dr. W. looked at the computer and stated  that right now this was good enough. In 2 months I should take an MRI and a throat scan and the day after meet with him again.

October 22, 2005  The weaning of the dilaudid was done exactly by Dr. orders ..

Questions for the Dr. Why is my left side of my jaw still aching as it was from Day 1? A.  It is best to use the exercise unit which will help make the say more pliable. Why is the right side of my throat appear to be flabby and liquid like goiter while the left side does not have  such beautiful attributes? Caused by radiation?  It may never come back normally. Tongue is still sort of burning. Chemo helped   Also an area where there has been no change since the onset of it was the balls of my feet. COULD BE A PERMANENT factor caused by the repeated radiation  or chemo..

November 7, 2005. I wrote my Cancer Center Nutritionist a letter with some of the following thoughts. "My appetite is still very bad.  Something's I can get down easily. Most things I can actually eat. But eating for any period of time puts me in a mental state of " I don't want any more of this!".. The best thing so far was homemade green split  pea soup with ham. I ate two bowls. The next day I had one bowl because that was all that was left.  Yesterday I had part of a can of clam chowder at lunch and then I could only eat part of what was left at supper avoiding the chunks of potato. When I awake in the morning my tongue and mouth feel  fine and almost normal. I consciously test for it.  A half hour after I am up my tongue tastes like it has acid on it or like I had just swallowed gasoline.  It must have something to do with my desire to eat.  I take Nexium daily at supper time. "
 
My thought was to see if they do such a thing as a scrape of  the tongue and send it to the lab to see what is  the chemical make up  of what  my tongue or oral cavity is putting on my  tongue.  There is something in my body chemistry balance that is not right. I have mentioned this to 3 DR's M, W. & G at the MD Andersons Cancer Center.  Most have pushed it off as "It will take a while."   Certainly there must be a acid neutralizer that can help.

Nov. 15. Went to the MDACC Pain clinic  Dr. D for some help. No quick solutions. One thought was to return to the medication Cymbalta which has been approved by the FDA for both the treatment of depression and the management of pain associated with diabetic peripheral neuropathy. Cymbalta (an SSNRI) targets two chemicals, serotonin and norepinephrine, that are believed to play a role in how the brain and body affect mood and pain. . Weight has dropped and appetite has diminished. 

Nov. 22, 2005 Tuesday. As I write this I have a very significant sour bad metallic taste in my mouth. I do not feel very strong. Lately during and at the close of my feeding 2 cans of Probalance I have felt very weak and nauseous.

Visited Dr. C, Dental Oncologist MDACC was recommended by 2 Drs. He was compassionate and seemed to have some savvy ideas on how we can get Brian back to normal. I will spell them out here and let you know later how well they worked.

Starting  with tonight's feeding  I took a teaspoon of Cherry Flavored  Maalox to coat the esophagus. After that I used a prescription mouthwash  Chlorhedexine Gluconate .12%. 10 ml for 30 seconds.  It didn't taste all that good. Starting tomorrow I will reduce the 6 cans of Probalance tube feeding material to 5 cans with a one can of Boost or Ensure orally. Purpose is to give the body something different to process. Thoughts are that it body needs some variances. 

I am supposed to occasionally have a small glass of white wine and a piece of chocolate candy.  Somehow the body is creating a gas which ends up affecting things in the mouth.  I think the plan is to cut the Probalance to half of what it is now and substitute with other things. I started the morning with the Malox  and then followed with a glass of egg nog. That went down fairly well.  Then did the Chlorhedexine Gluconate  mouth rinse followed an hour later by a can orally of fortified drink. Had a pancake with only one can of Probalance.  Goal is to get off the tube ASAP and the bad taste in the mouth should decrease.
December 21. 2005 2 appointments  at MDACC.  Dr. Dr. Appointment kept me waiting  2 hours.  Dr. D in the Pain clinic did listen to and then responded to my complaint that  2 hours was an unprofessional and rude way to keep patients waiting.( He only sees patients twice a week. ) His response (believe this because it did occur) was  " My wife had to wait 4 hours at her Gynecologists office."   Wow!!!      Rather bad excuse to delayed treatment of patients. Does that give him the right to keep me waiting.  He did not like my questioning his ability to see patients in a reasonable amount of time. I told him I did not accept that as justification for keeping me waiting.
Dec. 22, 2005   This eating  disorder continues to be my biggest problem.  I am still on the feeding tube but  have been able to eat by mouth enough to  reduced the numbers of ProBalance  cans from 6 per day to 3 per day.  Hair is growing back fast. I even got a haircut on the trip back from MD Anderson Cancer Center yesterday. Left side of face still is as tight as a drum, not sensitive to touch, and no whiskers growing there yet. I can live with that but I have to develop an appetite to desire to eat more every day. Still at 146 lbs.