As I mentioned my wife Rosemary and I attended the TNA  National Conference on Trigeminal Neuralgia November 11-14, 2004  at the Walt Disney World Orlando Hilton in Florida.  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. 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 neurosurgeon  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?

  The next TNA  conference on TN will be in November  2006 in Seattle.  If you have Trigeminal Neuralgia symptoms I would highly  recommend that you and your spouse attend. Whether you attend or not be sure you buy and read ahead of the the 2004 500 page  book on TN called "Striking Back". $ 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.

 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.

I have determined that I also have a possibly unrelated TMJ problems.   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. I have seen improvement from Jim B. and Victoria W.  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.
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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  at 8am  to be followed by an appointment with him at 11: 15 to review the film. 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. Dr. RP thought that it is possible that I do not have  typical TN all.

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.

In the afternoon  we visited was with a PA.( Physicans Asst. )  who did  for extensive interview concerning my TN story history.  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. That 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". Since I am writing this at  11:04pm I must have survived it . 

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. ( In round figures of course. ) I guess it had a few more  gold plated wires than the other models. The process took about a 45 minute process.
I then went to the Anderson pain specialist where I had a 1:00 p.m. appointment.  Thankfully the very considerate staff agreed to work me in to see Dr. JM   2 hours earlier. It had entered my mind to go back to MRI and use the recliners if there was  going to be a 4 hour wait but fortunately I didn't have to do that. 

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." I went to a search engine study meeting and ability to think creatively and analytically was more present than it had been  for a long time.  I was not feeling high but 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 bano. (That is Bath in Espanola.) Have 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.

While  I was waiting for DR. LD another nurse was interviewing me about being a part of a research on an external  patch medicine. She was pre-empted by the PA's visit.  I did not see her again.  Research is so valuable but who wants to do it when  you there are other pressing things in the business and the patient world.  
It will be interesting to see what effect the methadone will have on me.  I will journal it here  at www.PartyTentCity.com/mytnstory.html  which is  uploaded as an "include page"  automatically  in about 8 of my medical recording sites.

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. I will be able to provide better details later. 

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 preparted 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. I currently have TMJ,  Tempormandiular Joint.  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.
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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

They also provided a very good supper with a wide selection from the Anderson Kitchen. 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 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. ( Maybe they carry a growth speed counter like you have a your high speed internet connection. ) 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. ( So I am told.  I don't have much hair left to lose any way so I guess I will joint the 'Bald is Beautiful" program.)

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. I was extremely busy with a very blessed heavy sales day. 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 9pm Today is a reason to post a change. See below in blue.  I have opened some recent medial bills.  I have Medicare and a secondary insurance company  handling most of the costs. 

What makes me more sick than chemo or TN pain is the thought of the amount of money that is  charged for services performed on a particularly long out patient  service day.  Most people just don't worry about it and are happy to let the insurance company pay the fees. Most people don't even know how much the insurance companies are paying.

But who really is paying for these high costs. It is the patient of course. Do they have to be so high? Do they have to make so much money  off some of the patients who have the insurance. If an individual is paying all medical costs out of his own pocket he has very little power of persuasion to say " The amount you are charging is too high and I am not going to pay you that much. "  He has little choice but to pay the fees  and keep the lawyers off his back. I am very seriously considering putting up a website that will list some of the fees charged. Send me your costs paid  and I will put them on the web. 
I will start with my expenses. Read them when you are sitting down.. The price that is charged and later when most of the charge is  paid for

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.  I will post some before and after pictures on  a brave future moment.

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  it  would not  be done because "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???

 So we try a little of this and a little of that and as long as the insurance company is paying for it the medical community continues to stay in business. I will be starting my webpage  on medical costs soon and you will find a link to it here.  or email and bug me to get it started or send me some of your outrageous ( not just high) and I will get that posted pronto. 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. Got 600 photos  uploaded from  2 Sony Mini Camera CDR's to laptop. 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.  I will continue to work on that program. 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. (Maybe we could  have a death tax or a birth tax. ha ha. ) See June 14, 2005 entry. Brian  11:49pm

 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 on 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. I wonder how long this bone aches and sleep desire will last? If you know send me an e-mail with your experience. Saturday June 25, 2005. The answer to the above question is that much of the aches and pains have somehow been lost. That is good news. Maintain good health. Weight is at 152. Wife is trying to fatten me up to my 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. If this little bit of this information will be of some  value to you let me know or send it to a friend. Misery loves company.   "Pain Pals" are always in need. I am not sure why these images inserted  in this document  are not loading. 

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.  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. "  End of story,  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. 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 well 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. I think I even dreamed  some hallucinations about the procedure but as in all dreams I forget them,
 
159 lbs and climbing back to the calendar of future excitement at the M.D.Anderson Cancer Center
July 11 . Very few shocks.  Cut neurontin from 1200 to 900/ day hoping to decrease constipation problems. 

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 important Doctors"  attitude.

 As predicted I heard the 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. Will post those here later. 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 works. 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. "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. 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. Redid the mask for the revised dental stent.It took about an hour. I tookthe 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 to one with steel in  it to protect tongue.

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  7 oz. cell phone a Palmone Treo 650.  It does e-mail, surfs the web, takes 640x480 color pictures with a 2x1 zoom  lens, video tapes with sound, all Palm Organizer PA things  web, blue tooth, calc, calendar, text messaging, hot syncs to my computer, plays recorded music, sends 1 minute voice messages, will work with GPRS all over the world, has a gig expansion chip now  which can change with a  2 gig chip. If you have a Smartphone  Palmone Treo 650 pleae send me your phone no. I have some question that I can't find in the 200 page manual. You can send me  250 max text messages to my cell 713-927-4479. Soon I will determine a cell only e-mail no so attachments and photos can be sent.
 
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 gettting me out of my mask. It was not her regular machine.  Martin from Austin, another head neck cancer patient, becomes of member of the Brian's  Club Treo 650. 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.  One assisting  MD Dr.  __ shows me his Sprint Treo and becomes a member of  Brian's  Club Treo 650. We will share handling of technical problems such as.... my Treo would lock up taking photos but would still take video. Used wireless Blue tooth headset Jabar 800 for the first time. Very effective tool.  Have to learn to answer calls better  by putting the right pressure on the earpiece to answer phone. Ear pieces has Jog shuttle, caller ID and list of phone numbers. Weighs 25 grams.  Nutritionist Dr. K  Gives a 2 minute videotaped cell phone nutrition message to Rosemary who was not present. Purpose of transmitting info easily instantly utilized. 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. Determined that charger for  Jabar 800 using the USB port putting the connection in backwards  drains the battery to zero.
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. If it hasn't shrunk it will be a great addition to my face.
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.. Anyone one out there in  C Space familiar with that? No response expected  til clinic day Tuesday.

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 prescrpitons. ?$ 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 drymouth.. 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, troupel sleepting, increased sweatung/.  YUk,  ALL THE THINKS 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, side effeecs:  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 hypertense. t

Tues. Aug. 9. Rad. no. 11Then 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 and all available 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

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 wont  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. Hope I can sleep tonight.
 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. "
Cell phone broken, 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.  More later.

 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. Hope I can sleep tonight.
 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. "
Cell phone broken, 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.  More later.

Sept. 6, 2005, I started getting my nourishment from a feeding tube today.  See photos  below.  

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,
Thanks for reading this and sending your notes asking for an update. I have just not been in condition or in the mood to write until now. I went for an entire week with no desire to sit down to read and write e-mail. I must have been in very bad shape.

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. I was very weak. 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 have learned that the initials MD Anderson are better know as Most of the Day Anderson because the time spend 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. I hope that will go away soon but it could take 6-8 weeks.  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 increase.  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  Walgreens closed at noon even earlier than when they said they would close which was to be 4 pm. .

  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.  ( I may create some web page contributing forums on this very depressing subject for you to contribute if you area Houston evacuee. )

Sept. 23rd I was unable 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 unaware 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. When it gets hot in the kitchen, get out of the kitchen.  Hurricanes can not be controlled. They have bad tempers. They do what they want.  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 cold  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 in Big Mac land. Ok  black leather belt ................get ready for me to not be using the last notch to keep me from losing my pants.  More notes later as my journey through  cancer and trigeminal neuralgia proceed to make my life what  ever God meant  it to be.  Write me about your cancer or your TN. I will publish it on the net. Tell as much detail as you want. OThers care and often have good opinions as to what might help making your life easier.

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. Great. 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. .  Many happy customer 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. Want some stuff. Come and get it.   31 Gessner at Stoney Creek.

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. 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. I will show a picture of these belly button adornments when I can get it off my camera and reduced in size smaller than 2 megs.

October 6, 2005.  I have a picture of my latest feeding tube invention. " The Nelson Using Your Head System. "

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 expeslled.  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 As follows. ......................................... I don't think it was working.  Rosemary and I came up with an alternative program which I hope will work. ............................................

Dilaudid side effects will be posted here shortly. Be careful when you use that stuff.  It has a good purpose but can be dangerous. Brian

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.
 If the  Tumor dies how do you get rid of it?  The body will take care of that little by litle.

Does the body process out a little at a time as waste? 

 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. NO EXPLANATION As to the goiter flabby face.  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.

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. I would hate to believe it is all in my mind. It is possible.  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."  I need a scientific explanation of what is happening  or some new kind of hope.. Certainly there must be a acid neutralizer that can help. Here is what answer I got to the above request.   " I know you are a problem solver, but I really don't think there is a test for the tongue.  Give yourself time.  Just keep experimenting with food/liquids. kb.

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. Dr. D. also suggested moving my scheduled Jan, 3, 2006 MRI and Head Neck Ultra sound up sooner incase there has been a reoccurrence of the  tumor. I have to call Dr. W. to change that.  Unfortunately the Dr's do not see the super bitter taste as pain. I do. It has almost debilitated me  to a point where getting anything done is a real task. 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. Dr C. explained this as ._________

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. Rosemary took notes. 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. Fortunately I had my laptop so I was busy working on Photos. 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. ( I think I will do a web page on patients waiting. Let me know if you would like to contribute  your comments.)

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.  Dr. C. kicked my butt for not using the exercise machine Therebite .y jaw

Therebite Jaw Exercise Tool. This is not me but it is what the device look like. The application operation  is 3 times a day, 5 30 second recitations  at a time.

Therebite appliance with Carrying Bag.

Fluoride Treatment Cups.  Put flouride in the cups and wear it for 10 minutes . When your sliva is down you are even more susceptible to getting cavities.

He warned it is also used for exercising the muscle so that the nerves will eventually take  hold in my face. If I don't use it it my face will most likely dry up with permanent scar damage to the left facial muscle.  He also reminded me of the disasters that occur to radiated patients where the teeth can deteriorate. Therefore it is most important to apply the fluoride jell application treatment daily to strengthen the bone structure in the teeth.

December 26, 2005. Ate a whole turkey leg yesterday. I think taste buds are now very normal. I just don't like to eat and chew a lot. TMJ jaw will not let me open wide.  I really seldom have hunger pangs.  I noticed a different feeling in my tongue. Not sure what. It seems to want to move around on the left side which it did not do before. Could be waking up. Tongue was numb on left side as was my left cheek. Whiskers have not grown on left side but watching closely it appears that a few tiny gray hairs may be trying to grow. That is good news. Still on 3 cans (was 6) via feeding tube. Hope my attitude that I for sure want to get rid of it.  So many rituals to process in having it in. Can't use a back belt to strengthen the back wit the feeding tube in. Grandkids horsing around once in a while painfully  connect to  it.  Still 145 lbs. Christmas is all about eating which is not my favorite topic. Amazing how much of our dinner table topics relate to food talk between those that cook. I don't. I am lucky to be alive with my cooking ability. I guess the repetition boredom of food preparation just isn't  appealing.

December 31, 2005. Eating more. Cut tube feeding  from 6 cans to 2 cans in the last month.   Getting easier to eat. Still doing the mouth rinse chemicals in the morning and a teaspoon of Mallox prior to each meal.  Generic at Kroger for Mallox is less than half the price and another 10% off for Senior Citizens on Kroger products..  Whiskers growing a little more.  Holding weight at  146 lbs.

January 3, 2006. Took a ultra scan of the throat at MD Anderson hospital. Technician said there was no negative reports on my review but she had to check the radiologist. Came back and told me all is ok on the throat scan.  3 Hours later I took a 45 minute MRI. A long time to be in the cage. They asked me not to swallow during the time when the GE 2 million dollar machine is working on me. IT is hard to do not to swallow. I have cut to one feeding tube can since the beginning of the year.

January 5, 2006 Weight up to 147. Dr. Webber MDACC  saw me for 5 minutes today. Radiologist  for  MRI had not turned in his report.  Dr Weber looked at the film on the computer. He felt  it all looks a lot better than it used. to. He suggested I come back in 3 months. No other instruction.

January 8, 2006. I have totally weaned myself off the feeding tube. Now the objective is to maintain my weight  for 2 weeks not using the tube.  Current weight is 147 lbs. 
January 25, 2006 I have started to feel a few jabs of  pain on my right side near the ear targas.  It comes and goes. Taste buds are good. Can eat most anything now but just not a lot of it.  Jaw on left side is tight as ever. I do some exercises with  the Terebite  device above but I am not as disciplined to doing it as often as I should.  No progress so it is not very motivating to think it might take six months or more or maybe not at all. I do recognize that a unused body part will atrophies.  A few whiskers have started to grow.  Head hair is back to normal plus some extra new  free hair thrown in for the long journey. Soles of feet are still sensitive. Not sure if or when that will go away.
February 8, 2006. I called  to make an appointment to have my tube removed.  It can become a pain in the belly.  Some liquids crystallize around the tube making for a hardened mater which can be felt when  pressed.  Fastening tape attachment has to be replaced every week or two. . Exercise at the gym  does not  allow you to  press against the tube.  You can not sleep on your stomach. When grand kids jump on you one notices the sensation of touching the tub.  I am thankful for all my blessings. Jabs to the right  side of the face have not been prevalent for about 5 days. Starting to get some hunger pangs.. Weight still  147.
February 14, 2006 Click pics to enlarge.           Removed Tube.    Body hole to heal,  I hope. Like having 2 navels. .

Went to MD Anderson to remove feeding tube. It was inserted Sept. 9, 2005. I used it for 4 months. A polite nurse  cut the tube in half  after cutting some of the stitching. It was a little sensitive. Then he pulled it out.  The end of the tube was in my body about 9 inches. It turned a khaki color. When he pulled it out it is spattered a kahki color stomach acid  but there was not any leaking  from the hole it used to enter the body.  .I don't know why.  It seems like it should have leaked. but it didn't   The tube has a closed end but there are 5 small oblong circles where the feeding nutrition can enter the stomach.  The procedure is use  warm water to flush with a pressure tube before and after so  the tube will not become clogged. It is  very important to flush..  Mine never clogged.
I had an appointment to see Dr. M immediately after the tube removal. He didn't say much. He just smiles and nods.  He and a fellow did want to look at the tube removal location. They thought the body was doing well. There is probably a concern that  it can get infected. Dr. M put his tender gentle hands all over my neck again checking  for any feeling of growth. Previously  he could feel the lymph node growth. They are not there now.  He said that if there was a return of the tumor on the left side that radiation would not be used in that part of the body again. I would only use chemo.  No further appointments are needed with this radiologist. No more appointments  until  April  2006 with Dr. W.  I anticipate I may have a MRI or some kind of a scan around that time.

March 18, 2006 I am progressing well.  It is nice not have the feeding  tube in my stomach. So now  I look  like someone with 2 belly buttons. I guess it will not heal over so I just will have a souvenir  from  the tube. I am glad to have it out but I am very glad to have been able to have had it in when I just could not eat anything. I survived with nourishment from a can. After 4 months of the same old food and all the routine that goes with it gets old and the weaning from the tube was a welcome treat and blessing.  My appetite has returned to being  normal.  My jaws get a little tired after eating a lot of food. I caution not to bit my lip on the inside left because I don't feel it like I should.  The Balls of my feet are still  sensitive from the chemo. A few whiskers continue to grow but not completely.  The jaw is still stiff and shows no sign of it  disappearing.   A week ago we returned from a 5 day cruise in the Gulf of Mexico.  I anticipated this as a great opportunity to gain weight.  Gluttony on cruises is normal. I started at 149 and finished the cruise at 150. Wow................ a  whole pound after double deserts everyday and  eating 4 to 5 meals a day. I thought I would have gained more.

April 4. 2006 I had an appointment with Dr.  W. At MD Anderson Cancer center.  Nothing New. He will schedule a chest exam and an MRI in August 2006 to see if there is any signs of cancer hiding somewhere in my body.

May 22, 2006 Not much in changes to write about. Jaw is still stiff. Can't open wide. Dentist reminds me that I have always had a TMJ type problem. Never could open my mouth super wide. Had a serious bout with TMJ while he was fitting me with braces and reshaping my mouth about 20 years ago while I was in my  40's . Old bones don't move as well as when you were younger. I would  like to but can not eat "corn on the cob." My upper jaw extends further out than the lower jaw. Not sure if that will ever get fixed. Had a teeth cleaning by Ruth who does an excellent job  on a hard to open the mouth patient like me. I expected the worst since I had not had dental care in about 2 years. She was favorably surprise. I needed to have an old pre cancer   root canal capped and  2 cavities  filled. That will occur on May 23, 2006.   Still not many whiskers on the left side.

My appetite is awesome. I eat  a lot but still my weight is hovering around 151.  I have  6 cases of the Pro Balance feeding tube supplements left over. On days when feel for a cold glass of chocolate milk  or if I am so very rushed that I have little time to eat I mix a can of the Pro  Balance  ( A Nestle product ) with  Hershey's Chocolate Syrup  which tastes almost like mixing it with milk but it has 300 calories.

I have been burning up a lot of energy with my  current post cancer passion of building a dock on the water behind my property.  Not sure where I get the energy to bulid this.  It could be my mid life crisis or it could be  from being incapacitated to the point not being able to even drink cold water that I relish how much the body can now  do. Now my dock  is 49 feet long. I will build it across the property  to the 100 ft mark. Hundreds of steel pipe are driven into the ground  support a dock that could be  over 20 feet underwater. The picnic table, grill, and Hammock Holders will be underwater from time to time.  The highest the water has ever been is to the top of the 2 flag poles. See my pictures at  www.Red-Stairs.com    Originally it was designed to prevent erosion control.  My shoulder now aches from heavy sledge and nail hammer work.  Will give it a rest starting  May 27, 2006 on a vacation to New England. It will be my first plane ride since November 2004  when the altitude caused excruciating pain on the trigeminal nerve en-route to the  TNA conference.  If the pain comes back I am in big trouble. I will let you know. 

It is still interesting  how the balls of my feet still feel the effects of the chemo.

Here is a recent church photo showing me with my  hair fully grown back.  It is still gray.


August  9, 2006 I report in  to MD Anderson for  my periodic check up. Walking  the halls is like going home with mixed feelings of " I have been here before but I  hope I don't have to come back" feeling.   I have a chest X-Ray  PA and LAT meaning 2 different directions. Then I report for preparation for an MRI. Once you are weighed, checked for blood pressure you get the blue  hospital gown to wait in an area where a half dozen other  cancer patients are waiting. This wait was over an hour  where as blue gowns in common you have an easy to discuss medical situation. "What are you here for."  Everyone has a totally different story of cancer.  Each one discusses what they have and you feel blessed that you didn't have what they have and hope that your cancer doesn't migrate or come back  to another part of the body. Some MRI's are more painful than others. This one  took about an hour. They did about 6 different  positions  from 4 to 8 minutes.  It is not fun when they tell you to lay rigidly still for  6 minutes and if at all possible to swallow your saliva.  Well you  can't do that forever. Your mouth fills up and sooner or later you do swallow. They get better pictures if you don't.  Previously I wanted to and was allowed to sleep which helps pass the time. This one  they didn't want me to sleep. If you are claustrophobic you are treated differently.  That would be a big problem. There is no room in the chamber. Some technicians are more compassionate saying things like " only 3 more  sessions to go.  I was glad when it was over but glad they had the equipment to check me out.
August 10, 2006. Had a check up with Dr. W. the head of Head and Neck. He did  the usual feeling of the jaw and the neck. The radiologist had not read the  MRI film  but Dr. Wlooked at it on the computer and found nothing that he could see. I asked about the stiffness and atrophy in my left jaw. He said if the nerves had   not grown back by now that they probably wouldn't .  So I guess I am stuck with a stiff left side of my face with very few whiskers growing there. He rescheduled me for a  my next visit to be about 4 months later. About 2 weeks later a staff member Carmen calls me  to tell me that there was no problem when the specialist  read my  MRI's. Nice that they were so prompt.  The balls of my feet still feel different from the chemo. My weight is stable around 155. I seem to have a lot of saliva in my mouth which I am thankful for. My tongue has an almost burning feeling. I am not sure what that is about.

Sept. 5, 2006.  For a month I have had this dry cough. I feel fine but to others it sounds like I am dying. Probably not related to cancer.  Finally broke down and visited my GP DR. after  2 years. He barely knew  me but when I made reference to the electrical TN shocks he recalled my case.  A chest XRay  showed some funny scarring which he could not read.  Blood tests showed white blood count as normal. No real answers. I really find having this journal helpful because a month from now I will not remember anything of what I took to solve my problem. The G prescribe the medications  for  my cough : Levaquin 500MG 1 per day ( 7 pills $ 96.29 at Walgreens Wow expensive ) and Benzonatate  1-2  3 times a day.  Called Pearls  almost clear little yellow. These were specifically for cough.  ( 40 pills $ 35.20) and an over the counter drug Mucinex DM  About 20 pills $14 for but the Wallgreen generic is  Mucus Relief DM  It is Guaifenesin 400MG  30 tablets on sale for $ 7.99 . It tastes terrible as you put it on your tongue. That is a big difference in price.. It is a expectorant cough suppressant. The pharmacist said they were the same thing. I am to go back in 2 weeks where he will take another X-ray.
 

Sept. 12. Flew to Portland with Rosemary to attend the  Biannual  6th TNA National Conference Sept 13-16, 2006. Wednesday was to be a national strategy session on curing TNA.  Ended up the strategy was already decided  to raise $ 5,000,000 which the State of Florida would match for a total of $ 10,000,000 The money would go to the McNight Brain  Institute in the Research department at the University of Florida which will include adult stem cell research.  So the day was spent on speculating ways to fundraise $ 5 million. Not quite my bag.  Thursday and Friday I took photos of attendees at the conference and showed  150 in a slide show at the Friday night Gala. It was short with music but not an audio script.  I will  develop my own version of a slide show compassionate to TN patients. The draft is at http://www.newmedicaldirectories.com/Trigeminal-Neuralgia-Slide-Show/Draft.html   I attended many patient stories. One TN client  Patricia C 2 years ago developed the foreign accent syndrome after a MVD with  DR. C.  It has become a burden to her.  She promised to write me about it. I wrote a compendium page on this a year ago at http://www.nelsonideas.com/rare-medical-problems/foreign-accent-syndrome.html   I agreed to post her story there and others who have this very rare disorder may be able to communicate  with one another.  It was most shocking and interesting to vist with George Weigel  who Co- Authored the Book on TN Striking Back with Dr. C.  He had been to all 6 conferences and this was the first one where he was there in pain. His MVD Worked for 9 years.   A 2nd MVD recently  did not  work. Darn.

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I hear from many of you by email or by phone.  I am glad you are reading this column. I hope you learn something. Some of you have actually read the entire site. Congratulations.  So many of you have very unique situations and continue to struggle with pain and  do want help. Usually I can not identify with all of your specific problem. I encourage you to write down everything that has happened to you  in a journal  and email it to me. I will post it on the net and just possibly in the future someone with a similar problem may write  or call you and share their situation with you. Often the doctors can not put their finger on your problem but another patient might be able to help you. Rare cases have no way of getting to every doctors brain  and will not always be available to you.  Your story might find its way on the net to someone who can identify with you.  At that point you may go to a specialist who might be familiar with your type of illness. So many people have been to multiple doctors only to report that the doctors have no idea what is wrong with them. In the end you have to be your own preliminary diagnostician.
I will continue to write more as my cancer monitoring and TN permit.  You can call me at 713-467-3025 or e-mail me  by  Clicking here to e-mail me with any comments or questions.   http://www.partytentcity.com/mytnstory.html  or see my website.  www.IamFightingCancer.com
Thanks. 

  Painfully yours. Brian

 If you have any ideas, comments or advice on anything on this page on this please let me know.  I will continue to post my progress  here. See the bottom of this white box for more web pages on my cancer and trigeminal neuralgia.
Brian Nelson  713-467-3025.

This story gets updated as things progress for me.
Be sure and keep checking this story and the directory for new information.
Write to me about your problem. Click here to  e-mail me with any comments or  questions.
Send me your tips and tricks.

Here are some questions I have:
1. Why do so many people with TN have a problem opening  the mouth or eating? 
2.have the same problem but I think my opening  the Jaw Problem is with Temporomadibular Joint  better known as  TMJ. Are they related?
3. What experience have you had with meds?  (Take them early, exactly on time, get up during the night or take more meds?
4. Topical medicine. What have your heard about this using smaller does localized which would have less side effects.
5. Now that it has been determined that I have a malignant cancer tumor in my left cheek that is at  least 6 to 8 months old could it have been discovered  last summer when my face was numb in addition to the stabbing pains?