Time-line
Below you will find a general time-line that covers the disease discovery, treatment and finally recovery dates. These dates would only apply to my particular case as each person is affected differently by radiation and chemo. Unfortunately my cancer was not diagnosed as early as it could have been. Quite a bit of time was spent treating me for left side jaw infections since I had a history of these.
March 27, 2010 First indication of trouble
The left side of my jaw started to hurt. The symptoms appeared the same or similar to those of jaw infections I had had in the past. I decided to wait a few days to see if the situation resolved itself.
March 31, 2010 First trip to the dentist
I went to the dentist on 3/31 for my jaw infection. They gave me ampicillin which appeared to start working slowly. They also told me that the infected tooth needs to come out.
April 9, 2010 More Antibiotics
I ran out of antibiotics and the jaw infection had not completely gone away. The dentist called in a prescription for me to get a refill.
April 13, 2010 First trip to oral surgeon
I went to the oral surgeon expecting to have the problem tooth extracted but this visit turned out to be just a consultation (meet and greet).
April 23, 2010 Swollen Gland Discovered
Very swollen gland in the left side of my neck. My jaw does not hurt as much as it did before but is still sore. I don’t know if I should go back to the doctor for more antibiotics or not.
June 4, 2010 Pain Swallowing
My throat is starting to to become painful when swallowing either food or liquids. I took my last antibiotic. The gland on the left side of my jaw is very swollen.
June 5, 2010 Ear is starting to Hurt
I think that I again have an infection on the left side of my face. The left side of my throat is starting to hurt enough to impair my ability to eat. Now my left ear is starting to hurt. I may have to go to DR Johnson to get medication to kill the infection again.
June 6, 2010 Started taking naproxen sodium for pain
I woke up at 12:30 am last night and took a naproxen. It does seem to be pretty effective for the throat pain. I slept very poorly for the rest of the evening. I feel like my windpipe has crap in it and it is making me snore more than usual which wakes me.
My ear is still slightly sore.
Throat is still very sore.
I am wondering if I have picked up a bronchial infection?
I may have to make an appointment with Dr. Johnson early this week to nail down the cause of my throat issues.
My ear is still slightly sore.
Throat is still very sore.
I am wondering if I have picked up a bronchial infection?
I may have to make an appointment with Dr. Johnson early this week to nail down the cause of my throat issues.
June 11, 2010 Gland is still swollen
Gland is still swollen on the left side only
Throat is slowly getting better day by day, at least the pain of swallowing.
Still taking naproxen daily.
Throat is slowly getting better day by day, at least the pain of swallowing.
Still taking naproxen daily.
June 12, 2010 Called the dentist
I got tired of the jaw issue and called the dentist yesterday. She prescribed flagyl and amoxocillin to be taken at the same time. I started this course last night. To this point the medication is not bothering me.
I made the appointment to have my top tooth extracted on Monday 6/14 at 10:50 AM.
I made the appointment to have my top tooth extracted on Monday 6/14 at 10:50 AM.
June 14, 2010 Oral Surgeon (CT scan)
The Oral surgeon decided not to pull the top back left tooth and have a deeper look at my throat issue. He sent me to Mercy for a CT scan on 6/14. On June 15th he called me and said that I had a “Mass” approx. 1 inch in diameter pressing against my throat and tongue base. Potentially a necrotic lymph node or a benign cyst in his opinion. This needs to be surgically removed. He recommended an Ear, Nose and Throat specialist.
June 22, 2010 The ENT did a biopsy
The ENT surgeon did a biopsy today and drew 10cc of fluid from the growth in my neck. He said he should have the results in 48 hours. I should call them if no one has called me by Friday.
June 29, 2010 Medical Update
The first biopsy did not gather enough cells to give any answers. A new surgical biopsy has been scheduled for July 12th at 9 AM. Pre-op check-up is July 1st at 1 PM with a meeting with the doctor after.
I told Shirley that I was not happy with the timing of these events and would like things to move along more quickly.
I am still taking 3 naproxen per day and I am relatively pain free at that dose.
I told Shirley that I was not happy with the timing of these events and would like things to move along more quickly.
I am still taking 3 naproxen per day and I am relatively pain free at that dose.
July 1, 2010 Pre-Op work done
I had my pre-op work done at Mercy. EKG and blood work. After Mercy Martha and I went to the ENT to discuss what was known so far. He told us hold the July 12th biopsy surgery would go and what he was planning on doing. He is going to take little “bites” out of the inside of my throat with a biopsy tool.
He said his best guess at this time was that the issue was NOT malignant but that is a guess at this point.
The possibilities include malignant cancer (radiation, chemo)
Non-malignant tumor (medication or surgery)
Cyst/lymph node (surgically remove it)
Biopsy surgery July 12th and I have to be at Mercy at 7:45 in the morning.
He said his best guess at this time was that the issue was NOT malignant but that is a guess at this point.
The possibilities include malignant cancer (radiation, chemo)
Non-malignant tumor (medication or surgery)
Cyst/lymph node (surgically remove it)
Biopsy surgery July 12th and I have to be at Mercy at 7:45 in the morning.
July 12, 2010 Biopsies taken
I went to Mercy on 7/12 to have my invasive biopsies taken from my throat. The procedure itself went very smoothly. My throat was VERY sore for the next couple of days. Today 7/14 I will call the doctor and get the results of the biopsies. He is pretty sure that we are dealing with a branchial cleft cyst.
July 14, 2010 Malignant Neck/Throat Cancer
On the 7/14 the ENT called and informed me that the biopsies had come back malignant. At the time he indicated that he thought the cancer was virus caused and that there was a high survival rate of 75%. He also mentioned that this type of cancer is usually treated with radiation and no chemo. I am not sure why the no chemo piece.
I have a post-op appointment with the ENT for 7/19. I will need to talk to him about the long lag time between malignancy discovery and actually starting the treatment. I am having issues swallowing already I am not sure how a two week wait can improve the situation.
I have called and registered with Maine Med for treatment 7/15.
I now have an appointment with Oncology for 7/26 (consult)
I have an appointment with Radiation Oncology for 7/29 (consult)
I have a post-op appointment with the ENT for 7/19. I will need to talk to him about the long lag time between malignancy discovery and actually starting the treatment. I am having issues swallowing already I am not sure how a two week wait can improve the situation.
I have called and registered with Maine Med for treatment 7/15.
I now have an appointment with Oncology for 7/26 (consult)
I have an appointment with Radiation Oncology for 7/29 (consult)
July 19, 2010 ENT Post-Op meeting
Today was the post-op meeting with the ENT. The ENT wants to do a neck-dissection and has scheduled it for 8/11 at 1:30 in the afternoon. If we do the procedure I will be in the hospital for 2 days and out of work for 2 weeks. There is also loss of function associated with the procedure. The least loss would be the feeling in the left back side of my neck plus the loss of the ability to turn my head all the way to the left. I could potentially also lose control of my trap muscles which means no more ability to lift my left arm above my head.
I will get an opinion from the oncologist on 7/26 and from the radiation oncologist on 7/29.
I will get an opinion from the oncologist on 7/26 and from the radiation oncologist on 7/29.
July 26, 2010 Saw the Oncologist Today (Scary)
I saw the oncologist today, he is not a sugar coater this is going to be very unpleasant at best.
It looks like surgery is out for now he wants to start with radiation or radiation and chemo. I have a PET scan scheduled for tomorrow to help him better “stage” my situation. They inject you with radioactive dye.
My first treatment is scheduled for 8/11 but it has not yet been determined what that treatment will be.
He went over the CT scan in detail with Martha and I and explained what we were looking at. I have two masses one may be a cyst but he thinks not. The other is in the throat itself and is definitely cancer. The throat diameter is currently less than half what it is both above and below the tumor.
All pending dental work must be completed prior to the beginning of radiation treatments.
Possible bad stuff:
permanent loss of taste
permanent loss of saliva glands
inability to swallow for several weeks and thus a stomach tube for feeding
he wrote me a script for oxycodone
It looks like surgery is out for now he wants to start with radiation or radiation and chemo. I have a PET scan scheduled for tomorrow to help him better “stage” my situation. They inject you with radioactive dye.
My first treatment is scheduled for 8/11 but it has not yet been determined what that treatment will be.
He went over the CT scan in detail with Martha and I and explained what we were looking at. I have two masses one may be a cyst but he thinks not. The other is in the throat itself and is definitely cancer. The throat diameter is currently less than half what it is both above and below the tumor.
All pending dental work must be completed prior to the beginning of radiation treatments.
Possible bad stuff:
permanent loss of taste
permanent loss of saliva glands
inability to swallow for several weeks and thus a stomach tube for feeding
he wrote me a script for oxycodone
July 27, 2010 PET Scan Today
Today I went in for a PET scan which should help the oncologist determine what “stage” cancer I am at. The inject radioactive material into your blood stream and then have you site very still for 40 minutes. Then they put you in a machine that looks and acts like a CT scan but takes about 25 minutes to complete the process. The radioactive material accumulates in areas of high metabolic activity (like cancer) and shows up on the scan.
July 28, 2010 Root Canal
I have a root canal scheduled today at 1:45. The oncologists want me to have all pending dental work complete prior to the start of radiation.
I will call about PET scan results today.
I will call about PET scan results today.
July 29, 2010 Radiation Oncologist
I saw the radiation oncologist today and he reiterated the issues that were likely to occur with a cancer in this location. Feeding tube required, a lot of pain, inability to eat or drink by mouth. He seems like a good man and Martha and I liked him. The nurse (Jim) is also very good.
He had the results of the PET scan which were not good news. We now know that the primary tumor is located in the throat beside the left tonsil. The secondary tumor is in the left lymph gland and is almost as large as the primary. There appears to be the start of a tumor on the right gland.
Treatment will be full throat radiation but in a high tech way. The simulation will take place at the Scarborough cancer center 8/10. The actual treatment will be at MMC in Portland and begins on 8/25.
The first chemo is scheduled for 8/13 (Friday the 13th) at the SCC.
I seem unable to tolerate the original pain medication and have been switched to vicodin over the last weekend.
My remaining dental work will be performed 8/4. She will take care of all remaining work with the exception of the tooth extraction.
Temp cap fell off over the weekend.
He had the results of the PET scan which were not good news. We now know that the primary tumor is located in the throat beside the left tonsil. The secondary tumor is in the left lymph gland and is almost as large as the primary. There appears to be the start of a tumor on the right gland.
Treatment will be full throat radiation but in a high tech way. The simulation will take place at the Scarborough cancer center 8/10. The actual treatment will be at MMC in Portland and begins on 8/25.
The first chemo is scheduled for 8/13 (Friday the 13th) at the SCC.
I seem unable to tolerate the original pain medication and have been switched to vicodin over the last weekend.
My remaining dental work will be performed 8/4. She will take care of all remaining work with the exception of the tooth extraction.
Temp cap fell off over the weekend.
August 4, 2010 Dentist Marathon 2.5+ hours
A little over 2.5 hours in the dentist chair today. All my dentist work with the exception of the one extraction were taken care of today. I now finally have my crown.
The extraction with the Oral Surgeon has been rescheduled to 8/12.
My radiation cannot start until the extraction has healed.
The radiation planning meeting has been postponed until the tooth can be extracted and then heal. I will probably be about half way done with my chemo before radiation starts.
The extraction with the Oral Surgeon has been rescheduled to 8/12.
My radiation cannot start until the extraction has healed.
The radiation planning meeting has been postponed until the tooth can be extracted and then heal. I will probably be about half way done with my chemo before radiation starts.
August 16, 18, 2010 Tooth Extraction/PEG Tube/Simulation
I drove to Windom on 8/12 and had that back top left molar pulled. I never needed to take any additional pain meds for this it really did not hurt much at all.
Today is a day off from work so that I can have a feeding tube put in (PEG tube). I have to be at MMC at around 7:45 for a 9 AM procedure. This is out patient.
Also today at 2 PM is my radiation “simulation” where they will make my mask that will hold me in position as well as be marked up with target information for the actual radiation procedure.
First chemo is now scheduled for 8/24 at 9:30 AM.
First radiation is now scheduled for 9/1 at 11:45
Today is a day off from work so that I can have a feeding tube put in (PEG tube). I have to be at MMC at around 7:45 for a 9 AM procedure. This is out patient.
Also today at 2 PM is my radiation “simulation” where they will make my mask that will hold me in position as well as be marked up with target information for the actual radiation procedure.
First chemo is now scheduled for 8/24 at 9:30 AM.
First radiation is now scheduled for 9/1 at 11:45
August 30, 2010 Through my back out
I threw my back out yesterday morning while doing my normal daily bathroom routine. Still pretty sore today. I think that I am going to call Missy and see if they have a recommended Chiro resource.
Still foggy this morning but I believe that I do feel a bit better.
Still foggy this morning but I believe that I do feel a bit better.
September 2, 2010 Chiropractor
So no radiation treatment yesterday just kind of a run thru. I went thru the routine of getting on the table and having the mask secured/clamped over my head and upper shoulders. Then they took x-rays and calibrated the machine.
At the end of the day I went to the Chiro that had been suggested to me by Janice from WCSH. Happily he turned out to be just the kind I like. Gary Smart has a very firm method which happens to work with my type of issues.
At the end of the day I went to the Chiro that had been suggested to me by Janice from WCSH. Happily he turned out to be just the kind I like. Gary Smart has a very firm method which happens to work with my type of issues.
September 4, 2010 Began cancer database and images
I am going to document my progress threw the head and neck cancer with images and commentary. These three are from 9/3, 9/4 and 9/5. 9/3 was a Friday and was my second chemo day and well as my second radiation treatment. 9/4 and 9/5 are over the weekend. Tomorrow is a holiday.
September 7, 2010 Drinking/Radiation
I drank to much this weekend. I drank Friday after chemo and Saturday, Sunday and labor day (Monday). The drinking does make me temporarily forget my troubles but then I think I actually feel worse the next day. Also I am pretty sure that the treatment is not being helped by the drinking.
I took an Ambien last night to help me sleep. I wake up a little spacey when I take Ambien.
Back to the schedule of radiation at 11:30 AM today.
Tomorrow I have the Chiro at 7:45 AM. The back is still a little sore but is much better that it was prior to the chiro.
Radiation was rather unpleasant today. I walked over which took approx 15 minutes, I got there at 11:15. They were running late and I did not get taken into the therapy room until after noon. I was more claustrophobic this time than I have been before. The mask felt really tight. 3 separate times during the treatment a “breaker” tripped after about 3 seconds. Then they had to come in and reset the breaker then start again. So my total time clamped down was increased.
I took an Ambien last night to help me sleep. I wake up a little spacey when I take Ambien.
Back to the schedule of radiation at 11:30 AM today.
Tomorrow I have the Chiro at 7:45 AM. The back is still a little sore but is much better that it was prior to the chiro.
Radiation was rather unpleasant today. I walked over which took approx 15 minutes, I got there at 11:15. They were running late and I did not get taken into the therapy room until after noon. I was more claustrophobic this time than I have been before. The mask felt really tight. 3 separate times during the treatment a “breaker” tripped after about 3 seconds. Then they had to come in and reset the breaker then start again. So my total time clamped down was increased.
September 8, 2010 Radiation
Radiation was not quite so bad today. I took off my shirt to make the mask feel a little bit looser and that seemed to help. The machine was fixed last night and worked properly today with no “breaker” trips.
Throat feels swollen inside after each treatment.
Martha and I talked to the Dr after the treatment.
Throat feels swollen inside after each treatment.
Martha and I talked to the Dr after the treatment.
September 9, 2010 Mouth Dryness
Last night was the first night where mouth dryness was really an issue. I woke up several times with nasal drip and tried to swallow but there did not seem to be enough liquid to do so. I think that I will need to take Ambien for the duration so that I can sleep though this kind of issue.
It is becoming harder to keep my mood up. I am looking into some herbal supplements.
Martha says that she thinks the tumor in the neck is beginning to shrink.
I asked the nurse about checking treatment progress yesterday and found that progress is not really checked. The treatment is determined ahead of time and basically just carried out. After the treatment is complete and healing has started the effectiveness of the treatment will be accessed.
It is becoming harder to keep my mood up. I am looking into some herbal supplements.
Martha says that she thinks the tumor in the neck is beginning to shrink.
I asked the nurse about checking treatment progress yesterday and found that progress is not really checked. The treatment is determined ahead of time and basically just carried out. After the treatment is complete and healing has started the effectiveness of the treatment will be accessed.
September 15, 2010 Gums are sore, taste is mostly gone, very little saliva
I hardly slept at all last night. Post nasal drip and the lack of saliva to make swallowing ineffective. In bed I constantly feel like there is mucus stuck at the back of my throat and cannot get rid of it.
Mouth is now constantly dry and I need to take sips of water many times per day.
I have started to use salt and baking soda oral rinses to keep the ph of my mouth from becoming to acidic.
Zinc sulfate is supposed to help preserve salivary glands and it has to be sufate not gluconate which is what I currently have. I am going to run out in a few minutes to pick some up.
The nurse told be today to take sudafed for the post nasal drip. The worst part about the drip is that it is near constant while clamped to the table with my mask on during radiation. I have to swallow repeatedly with no saliva and very limited movement.
My sense of taste is now almost completed gone. Vanilla ice cream is the only thing I have tried that tastes nearly normal.
Mouth is now constantly dry and I need to take sips of water many times per day.
I have started to use salt and baking soda oral rinses to keep the ph of my mouth from becoming to acidic.
Zinc sulfate is supposed to help preserve salivary glands and it has to be sufate not gluconate which is what I currently have. I am going to run out in a few minutes to pick some up.
The nurse told be today to take sudafed for the post nasal drip. The worst part about the drip is that it is near constant while clamped to the table with my mask on during radiation. I have to swallow repeatedly with no saliva and very limited movement.
My sense of taste is now almost completed gone. Vanilla ice cream is the only thing I have tried that tastes nearly normal.
September 17, 2010 Fourth Chemo
I had my fourth chemo treatment today. They prescribed a Fentanyl patch for pain and also gave me hydrocodone liquid that I can take through the tube if necessary. While taking a look at me they discovered that I now have a fungal infection in my mouth due to the lack of saliva. They prescribed Duke's mix with a statin in it to kill the fungus and numb the throat.
My throat was super sore when I got up this morning. I must continue to excersise my throat by taking food by mouth no matter how much pain.
My throat was super sore when I got up this morning. I must continue to excersise my throat by taking food by mouth no matter how much pain.
September 18 2010, Fentanyl
I put on the 12.5 mcg per hour Fentanyl patch this morning at 7am. The patch stays on for 72 hours and is then replaced. I am hoping it takes the edge of off the throat pain. I was also prescribed hydrocodone liquid so I can administer through the PEG tube more easily. Another new drug is dukes mix this also contains nystatin to kill the fungal infection "thrush" that I now have. I have to take this as a mouthwash and then swallow 4 times per day.
I did not take any naproxen this morning in anticipation on the Fentanyl kicking in. I think that was a contributing factor to the painful swallowing. I take one in a little bit.
Post nasal drip was not as bad last night and I only woke up twice to go the bathroom.
The cancerous node on the left side is now showing significant shrinkage after 11 radiation treatments.
I did not take any naproxen this morning in anticipation on the Fentanyl kicking in. I think that was a contributing factor to the painful swallowing. I take one in a little bit.
Post nasal drip was not as bad last night and I only woke up twice to go the bathroom.
The cancerous node on the left side is now showing significant shrinkage after 11 radiation treatments.
September 19, 2010 Ambien
I did not take the ambien before going to bed last night because I was a little worried about the Fentanyl patch kicking in while I was in an ambien stupor. But I could not sleep at all so I took an ambien at around 2:30 AM.
The thrush hurts worse than my irradiated throat does and the dukes mix is certainly not helping at a very fast rate.
The thrush hurts worse than my irradiated throat does and the dukes mix is certainly not helping at a very fast rate.
September 20, 2010 No Thrush
I slept pretty well last night. I am going to start working from home today. It is hard to keep up with the oral care currently required while at work.
Martha will take me up to WCSH in a few minutes to get the laptop.
The thrush is still very painful. I can't tell if it is getting better or not.
Just saw the Dr at radiation and he said that there was no thrush that he could see. He said that the pain and white patches in my mouth are basically "sunburn" inside my throat from the radiation and that it would get worse before it would get better.
I heard a cracking sound while eating oatmeal tonight. I am hoping that I did not crack my lower back left crown.
Martha will take me up to WCSH in a few minutes to get the laptop.
The thrush is still very painful. I can't tell if it is getting better or not.
Just saw the Dr at radiation and he said that there was no thrush that he could see. He said that the pain and white patches in my mouth are basically "sunburn" inside my throat from the radiation and that it would get worse before it would get better.
I heard a cracking sound while eating oatmeal tonight. I am hoping that I did not crack my lower back left crown.
September 21, 2010 Chin hair falls out
I slept pretty well last night. I got up twice and took a teaspoon of hydro each time. My nose was pretty stuffy when I woke up.
Martha and I changed the fentanyl patch this morning atb 7am.
Yesterday was the first day that I worked from home and will for the duration.
The flouride trays are not burning as much as they did yesterday. This could mean that the thrush is clearing up.
I tried to crush my multi-vitamin and take it thru the tube. The tube clogged instantly. Martha and I will look into the correct method.
The hair in my goatee started to fall out today. It has also turned almost completely white.
Martha and I changed the fentanyl patch this morning atb 7am.
Yesterday was the first day that I worked from home and will for the duration.
The flouride trays are not burning as much as they did yesterday. This could mean that the thrush is clearing up.
I tried to crush my multi-vitamin and take it thru the tube. The tube clogged instantly. Martha and I will look into the correct method.
The hair in my goatee started to fall out today. It has also turned almost completely white.
September 22, 2010 Speech now impaired
Slept pretty well last night I only got up twice in the night.
Most of my goatee fell out yesterday afternoon so this morning I shaved it all off leaving the mustache.
Speech is pretty seriously impaired now. My saliva is very thick and seems to stick to my tongue and the sides of my mouth.
Most of my goatee fell out yesterday afternoon so this morning I shaved it all off leaving the mustache.
Speech is pretty seriously impaired now. My saliva is very thick and seems to stick to my tongue and the sides of my mouth.
September 23, 2010 PEG Tube (Percutaneous endoscopic gastrostomy)
I turned the humidifier on last night. It does seems to help with keeping the throat from drying completely out.
I woke up twice last night and went to the bathroom as well as having a tb of hydro.
Chemo is at 1 PM on thursday this week so today is chemo day.
I used the PEG tube to drink a glass of juice this morning. This is the first time I have really successfully used it.
The radiation oncologist told me to double-up on the Fentanyl tomorrow. That will be two 12 mcg patches.
The oncologist prescribed morphine liquid which I am trying for the first time today. Morphine is pretty hard to find around here. We have had to request that our pharmacy carry it cause they usually don't
I woke up twice last night and went to the bathroom as well as having a tb of hydro.
Chemo is at 1 PM on thursday this week so today is chemo day.
I used the PEG tube to drink a glass of juice this morning. This is the first time I have really successfully used it.
The radiation oncologist told me to double-up on the Fentanyl tomorrow. That will be two 12 mcg patches.
The oncologist prescribed morphine liquid which I am trying for the first time today. Morphine is pretty hard to find around here. We have had to request that our pharmacy carry it cause they usually don't
September 24, 2010 Morphine
Yesterday I was prescribed morphine and that it apparently pretty hard to get up here. We and the chemo people called all over the place to find 40ml of the stuff. But since my dose is 15ml at a time 40 ml disappeared really quickly. We had to order more which will be in Monday. Until then I was given a stronger version of the hydrocodone that I had before.
Radiation treatment #16 today. I only swallowed 2 during the whole treatment. I just could not get any saliva at all and what saliva I get is so thick it is like the mucus you cough up when you get a bad cold.
My opiates are making me constipated it has now been 2.5 days since I took a dump. I started taking milk of magnesia last night and will take it again tonight.
Karl gave me a call today and is going to come over tomorrow and work on capping my 3 chimneys. He says he is going to build individual concrete caps made to fit for them. Seems like a lot of work but I am thankful for the help.
Martha made some chicken noodle soup for me for supper but it (like most everything) just was tasteless. I could not eat but a tiny bit. So I through a bowl of soup in the blender and then sent it thru the PEG tube. Both the doctors and the nutritionist said that I should start getting used it it now before I really need it.
My throat does hurt but what hurts more is the side of my tongue. Virtually anything I drink seems to cling to the damaged parts of my tongue and throat and burn. I need to immediately rinse my mouth of after drinking or eating most anything. I had my last beer for the duration today and will not have another for that very reason.
The nutritionist wants me to get 2400 calories per day. I think that is going to be difficult with the amount I am eating at this time.
Radiation treatment #16 today. I only swallowed 2 during the whole treatment. I just could not get any saliva at all and what saliva I get is so thick it is like the mucus you cough up when you get a bad cold.
My opiates are making me constipated it has now been 2.5 days since I took a dump. I started taking milk of magnesia last night and will take it again tonight.
Karl gave me a call today and is going to come over tomorrow and work on capping my 3 chimneys. He says he is going to build individual concrete caps made to fit for them. Seems like a lot of work but I am thankful for the help.
Martha made some chicken noodle soup for me for supper but it (like most everything) just was tasteless. I could not eat but a tiny bit. So I through a bowl of soup in the blender and then sent it thru the PEG tube. Both the doctors and the nutritionist said that I should start getting used it it now before I really need it.
My throat does hurt but what hurts more is the side of my tongue. Virtually anything I drink seems to cling to the damaged parts of my tongue and throat and burn. I need to immediately rinse my mouth of after drinking or eating most anything. I had my last beer for the duration today and will not have another for that very reason.
The nutritionist wants me to get 2400 calories per day. I think that is going to be difficult with the amount I am eating at this time.
September 25, 2010 Nausea
My constipation persists now starting day 3. I have taken milk of magnesia the last two nights and am drinking prune juice right now.
I am very very dizzy this morning. I am not sure of the cause. We doubled up the Fentanyl patches yesterday morning so it has now been 27 hours or so. Also the steroids from Thursdays chemo would be wearing off today.
Martha and I tried to be romantic this morning to no avail. I am afraid that opiates are not your friend when it comes to sex.
5 pm and I am still nauseous and still quite dizzy maybe the chemo is catching up to me.
I am very very dizzy this morning. I am not sure of the cause. We doubled up the Fentanyl patches yesterday morning so it has now been 27 hours or so. Also the steroids from Thursdays chemo would be wearing off today.
Martha and I tried to be romantic this morning to no avail. I am afraid that opiates are not your friend when it comes to sex.
5 pm and I am still nauseous and still quite dizzy maybe the chemo is catching up to me.
September 27, 2010 Saliva
Martha and I went to bed a little after 9 pm last night and I did not get up until 8 am. That is very long time for me to be in bed.
Talking has become both difficult and annoying. My tongue is constantly coated with thick ropey saliva and every word I speak sounds like I am mumbling.
Past the halfway mark for the radiation now, still along ways to go.
Saliva is getting thicker and thicker soft foods just seem to get wrapped in it.
Talking has become both difficult and annoying. My tongue is constantly coated with thick ropey saliva and every word I speak sounds like I am mumbling.
Past the halfway mark for the radiation now, still along ways to go.
Saliva is getting thicker and thicker soft foods just seem to get wrapped in it.
September 28, 2010 Blood in mucus
I woke up several times last night and took 10 ml of morphine each time.
Some of the mucus that I spit out of my mouth at around 10:40 AM today had blood on it. I wiped it onto a tissue, put it in a plastic bag and am taking it in to show to the radiation people. Maybe I do have thrush? The radiation oncologist told me last week that it was just the radiation not thrush.
Radiation Oncologist says the throat looks pretty much like it should and that there will be some blood combined with the mucus. he also said that for most people the most pain is not at the very end of treatment but can be a few weeks earlier a couple or three or so (no specifics).
Constipation again this is day 2. I will probably take 3 senna-lax tonight with whatever liquid I have for a late supper. Probably caused by the morphine.
Some of the mucus that I spit out of my mouth at around 10:40 AM today had blood on it. I wiped it onto a tissue, put it in a plastic bag and am taking it in to show to the radiation people. Maybe I do have thrush? The radiation oncologist told me last week that it was just the radiation not thrush.
Radiation Oncologist says the throat looks pretty much like it should and that there will be some blood combined with the mucus. he also said that for most people the most pain is not at the very end of treatment but can be a few weeks earlier a couple or three or so (no specifics).
Constipation again this is day 2. I will probably take 3 senna-lax tonight with whatever liquid I have for a late supper. Probably caused by the morphine.
September 30, 2010 Red Neck
Added a 12.5 mcg to a 25 msg fentanyl path (3 patches) bringing me up to 37.5 mcg/hr total. I may move to 50 mcg/hr at the next switch.
You can see how red my neck is at this point in the photo. My whole neck and up to the jaw line. It now feels "sunburny" on the exterior as well as the interior
Throat hurt very badly this morning when I got up. I would call it a 7 when swallowing and it stayed around 4 when at rest. That is why I ended up taking morphine twice in the AM.
Today was chemo #6 only one more to go and I am done. I verified that fact at the chemo place today. We had a new nurse practitioner whose name was Julie today. I thought she was pretty good and quite thorough. She prescribed additional morphine, anti-nausea in liquid form and meds to address my constipation issues.
Tongue bad today. Just touching the teeth (constant) burn but taking food by mouth or drinking something like Juven REALLY burns. I have to rinse my mouth out immediately after or tears come to my eyes.
You can see how red my neck is at this point in the photo. My whole neck and up to the jaw line. It now feels "sunburny" on the exterior as well as the interior
Throat hurt very badly this morning when I got up. I would call it a 7 when swallowing and it stayed around 4 when at rest. That is why I ended up taking morphine twice in the AM.
Today was chemo #6 only one more to go and I am done. I verified that fact at the chemo place today. We had a new nurse practitioner whose name was Julie today. I thought she was pretty good and quite thorough. She prescribed additional morphine, anti-nausea in liquid form and meds to address my constipation issues.
Tongue bad today. Just touching the teeth (constant) burn but taking food by mouth or drinking something like Juven REALLY burns. I have to rinse my mouth out immediately after or tears come to my eyes.
October 1, 2010 polyethylene glycol (miralax)
Constipation day 5. I have a prescription for polyethylene glycol laxative which I will try as soon as I get back from radiation.
I only woke up once last night at around 2:20 am. I took one tablespoon of hydrocodone, rinsed my mouth out with water and went back to bed. I then slept until just before 6 am which is my normal time to get up.
#21 radiation treatment was today. My mouth and tongue were both very sore all day. Several times over the course of the day I would break into spontaneous fits of coughing. Several times during the day liquid felt like it was flowing into my windpipe when I was trying to swallow.
The tongue now hurts on both sides and on the top. Even plain water hurts when I take it by mouth. I used dukes mix several times just to deaden the pain for a short time.
I only woke up once last night at around 2:20 am. I took one tablespoon of hydrocodone, rinsed my mouth out with water and went back to bed. I then slept until just before 6 am which is my normal time to get up.
#21 radiation treatment was today. My mouth and tongue were both very sore all day. Several times over the course of the day I would break into spontaneous fits of coughing. Several times during the day liquid felt like it was flowing into my windpipe when I was trying to swallow.
The tongue now hurts on both sides and on the top. Even plain water hurts when I take it by mouth. I used dukes mix several times just to deaden the pain for a short time.
October 2, 2010 Constipation
Constipation day 6. I took miralax first thing this morning at around 6:30 AM before coffee.
Gargling with ginger ale or club soda actually seems to cut thru the mucus better then any other thing that I have found to this point.
I have been dizzy all day most likely from the chemo. At least this week I am not also nauseous. The new anti-nausea med seems to be working.
I helped Martha work on the brush in front of the house today so I got at least some excersise.
It is now a little after 8 pm and I am feeling quite a bit better. I have had a lot of fluids today and maybe that has helped.
Gargling with ginger ale or club soda actually seems to cut thru the mucus better then any other thing that I have found to this point.
I have been dizzy all day most likely from the chemo. At least this week I am not also nauseous. The new anti-nausea med seems to be working.
I helped Martha work on the brush in front of the house today so I got at least some excersise.
It is now a little after 8 pm and I am feeling quite a bit better. I have had a lot of fluids today and maybe that has helped.
October 3, 2010 Constipation ends day 7
I only woke up once during the night and I did not take any pain meds at that time.
Still constipated now on day 7 I suppose I will have to go to the hospital or have an enama or something pretty soon?
9:45 I vomited out of the blue almost no warning. I almost made it to the kitchen sink so most of the output went into the sink. The vomit looked like it contained broccoli which is what I had a little bit of in my goop late last night.
The lactulose stuff seems to have worked, constipation ends on day 7 at 2:45 PM. I am still not sure what steps I should take to keep this from happening again.
Still constipated now on day 7 I suppose I will have to go to the hospital or have an enama or something pretty soon?
9:45 I vomited out of the blue almost no warning. I almost made it to the kitchen sink so most of the output went into the sink. The vomit looked like it contained broccoli which is what I had a little bit of in my goop late last night.
The lactulose stuff seems to have worked, constipation ends on day 7 at 2:45 PM. I am still not sure what steps I should take to keep this from happening again.
October 4, 2010 Radiation Video
I got up around 5 times last night. I took a tablespoon of hydro at 2:30 am or so.
I vomited almost as soon as I got down stairs this morning. The nausea pills that I have currently are supposed to disolve on your tongue. I am wondering if my lack of saliva is interfering with their function.
I general now that constipation is over I feel much better today than I have the last two days.
I took my wifes tiny video camera into radiation today and took video of the treatment which took 17:02 seconds from the time that they the attendants turned on the camera as they were leaving the room. We had to have them turn on the camera since they did not want to be on the video.
I vomited almost as soon as I got down stairs this morning. The nausea pills that I have currently are supposed to disolve on your tongue. I am wondering if my lack of saliva is interfering with their function.
I general now that constipation is over I feel much better today than I have the last two days.
I took my wifes tiny video camera into radiation today and took video of the treatment which took 17:02 seconds from the time that they the attendants turned on the camera as they were leaving the room. We had to have them turn on the camera since they did not want to be on the video.
October 5, 2010 Burned Neck
I woke up twice last night. I took 1 tablespoon of hydro the first time I woke at around 1:30 AM.
Day 2 of constipation watch. I guess this will be recurring due to the opiates and the change in diet. This time I will be taking measures on day 3 as opposed to day 7. I have already started taking copious amounts of fluid wih my tube feedings.
Neck skin is starting to break down. I will probably have to put up with this pain in addition to the other since the skin will most likely not heal during radiation treatments. I asked what to do about the pain and itching at radiation and was prescribed silver sulfadiazine which is a healing agent. It burns when Martha rubs it on. Let's hope it works.
Day 2 of constipation watch. I guess this will be recurring due to the opiates and the change in diet. This time I will be taking measures on day 3 as opposed to day 7. I have already started taking copious amounts of fluid wih my tube feedings.
Neck skin is starting to break down. I will probably have to put up with this pain in addition to the other since the skin will most likely not heal during radiation treatments. I asked what to do about the pain and itching at radiation and was prescribed silver sulfadiazine which is a healing agent. It burns when Martha rubs it on. Let's hope it works.
October 6, Raw Neck
I had a small BM this morning, this would have been constipation day 3.
I slept very poorly last night, I remember getting up and looking at the clock three separate times and it always said 1:30? I think the ambien is playing tricks on me.
My neck is raw and bleeding on the outside. The prescription provided stings when applied. I made a video this morning that looks at the neck damage pretty closely.
I puked again this morning out of the blue. Maybe morphine on an empty stomach?
I slept very poorly last night, I remember getting up and looking at the clock three separate times and it always said 1:30? I think the ambien is playing tricks on me.
My neck is raw and bleeding on the outside. The prescription provided stings when applied. I made a video this morning that looks at the neck damage pretty closely.
I puked again this morning out of the blue. Maybe morphine on an empty stomach?
October 7, 2010 Vomiting
I have now vomited the last 5 days in a row, usually in the morning. I vomited a second time a little afternoon.
October 8, 2010 Last Chemo Treatment!
I only woke up twice last night. I took nausea meds at around 3 PM.
I had my 7th and last chemo treatment today! They still concerned about constipation since it is mostly fluid and could just be "blowing" past more solid masses in the bowel. I need to add more bulk and water to my diet. The dietition wants me to start putting my goop thru the tube. Normally this is VERY thick. Thinning it out to much will let the particles settle which will also clog the nozzle.
It is now 7:22 pm and still no BM yet today. I hope this not begin another stint of constipation.
I had my 7th and last chemo treatment today! They still concerned about constipation since it is mostly fluid and could just be "blowing" past more solid masses in the bowel. I need to add more bulk and water to my diet. The dietition wants me to start putting my goop thru the tube. Normally this is VERY thick. Thinning it out to much will let the particles settle which will also clog the nozzle.
It is now 7:22 pm and still no BM yet today. I hope this not begin another stint of constipation.
October 9, 2010 headandneckcancerpatient.com
I had a BM at 8 am. It was still all liquid though.
I bought the domain "headandneckcancerpatient.com" today. I am going to use this as an information site to document the ordeal and recovery. It is a longer name than I wanted but since most navigation is done via link clicking I think it will be ok.
BM mostly liquid some solid 1 PM
BM mostly liquid some solid 2:10 PM
BM small mostly solid 6 pm
I bought the domain "headandneckcancerpatient.com" today. I am going to use this as an information site to document the ordeal and recovery. It is a longer name than I wanted but since most navigation is done via link clicking I think it will be ok.
BM mostly liquid some solid 1 PM
BM mostly liquid some solid 2:10 PM
BM small mostly solid 6 pm
October 11, 2010 Throat Swollen
My throat is massively swollen this morning. I am again wondering if the fat content of my skin is having an effect on this.
I was not sure if my mask would fit over the swollen neck but it was not a problem. Radiation was uneventful.
I bought the domain headandneckcancerpatient.com and got the email set up today. I would like to have the site all up-to-date by the time I go back to work.
I was not sure if my mask would fit over the swollen neck but it was not a problem. Radiation was uneventful.
I bought the domain headandneckcancerpatient.com and got the email set up today. I would like to have the site all up-to-date by the time I go back to work.
October 13, 2010 Slept Poorly
Slept very poorly last night since I did NOT take an ambien and I DID take an Ativan. I feel like I woke up every 2 or 3 minutes all night long. I would look at the clock and it would have exactly the same time on it as it had the last time I looked. Tonight I will switch back to also taking the ambien at night but will try to skip the ativan.
October 15, Speech completely gone
I have completely lost the ability to speak now it is just whispers, hand claps , etc.
October 16, 2010 Mucus
I woke up at least 5 times last night and got up each time. I also had to spit up mucus each time.
I absolutely do NOT have the will power to stop picking at my radiation damaged neck. Unfortunately after picking it will need to be coated with ointment again which can range from mild pain to 11 or so on a scale of 1-10. For over a week now the external neck skin has hurt more than the the internal throat pain.
The main problem I have internally is the mucus which I don't believe can be considered saliva anymore. The term "ropey" does not do it justice. I can spit into the sink has hard as I can and the spit just hangs an inch or so out of my mouth in a huge glob.
The mucus is the reason that I am waking up so may times per night chocking. My wife finds this all very nerve racking.
Yesterday evening I was just standing in the doorway watching tv and the next thing I know I hear a loud crash which turns out to me falling against the wall and then onto the floor. I am not sure of the cause could be lack of sleep or the combination of drugs.
I absolutely do NOT have the will power to stop picking at my radiation damaged neck. Unfortunately after picking it will need to be coated with ointment again which can range from mild pain to 11 or so on a scale of 1-10. For over a week now the external neck skin has hurt more than the the internal throat pain.
The main problem I have internally is the mucus which I don't believe can be considered saliva anymore. The term "ropey" does not do it justice. I can spit into the sink has hard as I can and the spit just hangs an inch or so out of my mouth in a huge glob.
The mucus is the reason that I am waking up so may times per night chocking. My wife finds this all very nerve racking.
Yesterday evening I was just standing in the doorway watching tv and the next thing I know I hear a loud crash which turns out to me falling against the wall and then onto the floor. I am not sure of the cause could be lack of sleep or the combination of drugs.
October 18, 2010 Hospital
Felt really bad all day and went into the hospital on doctors orders. Dehydration. confusion, constipation. I was unable to eat or drink anything without vommitting it back up. Nothing would stay down.
October 21, 2010 Out of the Hospital
I got out of the hospital at the end of the day today. I also had radiation treatment #32 before I came back home.
October 24, 2010 Cool Mist Humidifier
Last night I slept with the humidifier dropping mist directly on my face and that actually seemed to work pretty well. My throat stayed relatively clear and I got a pretty good nights sleep.
October 26, 2010 Last Radiation Treatment #35
To day was my last radiation treatment. I brought my mask home with me today.
Now both chemo and radiation are compete. Let the healing begin.
Now both chemo and radiation are compete. Let the healing begin.
October 28, 2010 Vomit
Puked instantly upon getting out of bed.
puked just a little bit latter after after one sip of coffee.
I am hesitant to take any food or medications.
I started taking a new nausea drug yesterday but it not seem to have any effect.
I have felt pretty good most of the day today as long as I keep the ropey saliva broken up with club soda and keep some food in my stomach.
puked just a little bit latter after after one sip of coffee.
I am hesitant to take any food or medications.
I started taking a new nausea drug yesterday but it not seem to have any effect.
I have felt pretty good most of the day today as long as I keep the ropey saliva broken up with club soda and keep some food in my stomach.
October 30, 2010 Fatigue
Slept pretty well, no BM yet and no puking!
I have been taking naps all day fatigue is intense.
I have been taking naps all day fatigue is intense.
November 1, 2010 Ambien side effects?
I think I had one of those ambien side effects last night. I woke up at 2:30 in the morning on the couch in the living room with all the lights on. All of the kitchen lights were also all turned on. When I went upstairs to go back to bed all the lights were on in the bedroom also. I am not really sure what happened because all I remember is going to bed at around 9 PM.
November 3, 2010 Gum
Chewed a piece of sugarless gum. This is the first time I have put anything solid in my mouth for quite some time. Chewing brought quite a bit of jaw pain and a burning sensation at the back of my tongue on both sides. The good thing is that I could taste the gum. It was not full flavor but there was flavor.
November 8, 2010 Peaches
I eat 2 slices of peach today by mouth. I also had one spoonful of applesauce and tried a piece of pear which tasted terrible. I will now have to make a habit of taking at least some food by mouth daily.
November 9, 2010 Mucositis
Mucositis remains the major problem. My day is spent spitting up thick ropey saliva or trying to swallow same to clear my throat.
November 11, 2010 Oncologist
I went to the Oncologist today even though I went yesterday. The visit was due to a feeling of not being able to fill my lungs to capacity. The Dr. says my lungs are clear and I will just have to live with the feeling until the throat heals more.
November 12, 2010 Still not sleeping well
Still waking up 8 or more times per night needing to sip water and or hit the bathroom.
Started taking some liquid medications by mouth as opposed to the PEG tube.
Started taking some liquid medications by mouth as opposed to the PEG tube.
November 15, 2010 Back to Work
The mucositis is bad today. My throat feels very full and mucus just keeps coming up constantly.
Today was my first day back at work full-time. I am way out of practice.
Talking for any length of time remains a challenge.
Today was my first day back at work full-time. I am way out of practice.
Talking for any length of time remains a challenge.
November 16, 2010 Mucus
I had a BM without the benefit of taking a laxative this morning. That is the first time that has occurred in weeks.
Mucus still pretty heavy and on the move. I am having to spit constantly.
Mucus still pretty heavy and on the move. I am having to spit constantly.
November 17, 2010 Sore Throat
Today my throat is hurting a bit more than usual towards the top. It feels like the muscus has withdrawn from that area.
Yesterday we cut down the fentanyl to 62.5 mcg/ph so that could have something to do with the pain in the throat being a bit worse.
Today I was able to eat an entire scrambled egg smothered in butter. I was able to taste both the egg and the butter pretty well.
Yesterday we cut down the fentanyl to 62.5 mcg/ph so that could have something to do with the pain in the throat being a bit worse.
Today I was able to eat an entire scrambled egg smothered in butter. I was able to taste both the egg and the butter pretty well.
November 18, 2010 Slept Pretty Well
I slept pretty well last night. I used my headband off and on to hold my mouth shut to keep it from drying out.
My stomach has been a little sore all day since I changed the direction that my PEG tube points (yesterday) I may change the direction back today.
I tried to eat another scrambled egg today but this time the butter quotient bothered me. I will have to ask Martha to lighten up on the butter.
My stomach has been a little sore all day since I changed the direction that my PEG tube points (yesterday) I may change the direction back today.
I tried to eat another scrambled egg today but this time the butter quotient bothered me. I will have to ask Martha to lighten up on the butter.
November 20, 2010 Issue with Swallowing starting
Mucus seems to be forcing liquids into my nasal cavity today.
When I eat the egg at least half of each swallow got stuck in the mucus and had to be hacked back into my mouth and then swallowed again.
The mucus has been thick and resistant to being spit out all day today.
When I eat the egg at least half of each swallow got stuck in the mucus and had to be hacked back into my mouth and then swallowed again.
The mucus has been thick and resistant to being spit out all day today.
November 21, 2010 Cream of Wheat
Mucus is really on the move today, I am spitting it up constantly.
I ate almost a whole bowl of cream of wheat for breakfast this morning. There was almost no pain at all while eating this. This particular cereal seems to be small enough and liquid enough to bypass the act of getting stuck in the mucus in my throat. I might start eating this a little more often since it is the easiest thing to eat I have found so far.
Martha cooked a hamburger today and I tried to eat a small piece. The meet did not seem to hurt to eat but it got stuck in the the mucus at the back of my throat. I would eat 3 small bites then hack up 2/3s of it back into my mouth and swallow it again. Washing the burger down with water does not help it still gets stuck.
The hair on my face and neck is still not showing any signs of starting to grow again. I have not shaved or cut by hair since my second chemo treatment.
I ate almost a whole bowl of cream of wheat for breakfast this morning. There was almost no pain at all while eating this. This particular cereal seems to be small enough and liquid enough to bypass the act of getting stuck in the mucus in my throat. I might start eating this a little more often since it is the easiest thing to eat I have found so far.
Martha cooked a hamburger today and I tried to eat a small piece. The meet did not seem to hurt to eat but it got stuck in the the mucus at the back of my throat. I would eat 3 small bites then hack up 2/3s of it back into my mouth and swallow it again. Washing the burger down with water does not help it still gets stuck.
The hair on my face and neck is still not showing any signs of starting to grow again. I have not shaved or cut by hair since my second chemo treatment.
November 22, 2010 Stuffy Nose
I woke at 4 am this morning with a stuffy nose.
When I tried to drink my goop this morning on the 3rd swallow it started coming out of my nose. Since the goop is so thick this was not a pleasant experience. It looks like the mucus in my throat is now backing stuff I drink into my sinus cavity instead of letting it just go down my throat. I used the "neti"pot to rinse the goop out of my nose.
When I tried to drink my goop this morning on the 3rd swallow it started coming out of my nose. Since the goop is so thick this was not a pleasant experience. It looks like the mucus in my throat is now backing stuff I drink into my sinus cavity instead of letting it just go down my throat. I used the "neti"pot to rinse the goop out of my nose.
November 23, 2010 Issues Swallowing
I continue to have problems swallowing. Even small sips of water detour through my nose. The Oncologist thinks it could be a mechanical issue and has made an appointment for me at the ENT Dr. on 11/24 at 11 am.
November 24, 2010 Thrush?
I have an appointment with the ENT surgeon today at 11 am. hopefully he will be able to fix my swallowing issue. It is difficult to be happy for Thanksgiving when a new annoying problem is ongoing.
The ENT diagnosed "thrush" and prescribed a mouth wash that contains "nystatin" which should kill the fungus. As soon as Martha gets home from picking up Devan at college I will run over and pick it up at the pharmacy.
I am supposed to gargle/swish the nystatin around and then swallow it. Unfortunately I cannot swallow the nystatin goes up my nose. Still I give it a couple of shots.
The ENT diagnosed "thrush" and prescribed a mouth wash that contains "nystatin" which should kill the fungus. As soon as Martha gets home from picking up Devan at college I will run over and pick it up at the pharmacy.
I am supposed to gargle/swish the nystatin around and then swallow it. Unfortunately I cannot swallow the nystatin goes up my nose. Still I give it a couple of shots.
November 25, 2010 Thanksgiving
Thanksgiving day, Devan is home from college and Blake will be over later. I am not sure how today will play out since I still cannot swallow and thus cannot eat any of the Thanksgiving goodies. Bummer.
November 26, 2010 Nystatin
I was hoping that the nystatin would have worked a little more effectively and that I would be able to swallow at least a little bit better today but alas I still cannot swallow.
Today Martha, Devan and I went to ATT and had the service switched to the new phones.
Both iPads are scheduled to be delivered today so we are on the lookout for fedex
Today Martha, Devan and I went to ATT and had the service switched to the new phones.
Both iPads are scheduled to be delivered today so we are on the lookout for fedex
November 28, 2010 Back to Bennington
Martha took Devan back to Bennington today. I am still not in good enough shape to do that kind of trip. I am still pitting large amounts of mucus out daily.
Trush is still a problem as of today. I am not sure that any progress has been made yet. I am still unable to swallow. Tomorrow I see the ENT again and we will re-evaluate the thrush situation.
Trush is still a problem as of today. I am not sure that any progress has been made yet. I am still unable to swallow. Tomorrow I see the ENT again and we will re-evaluate the thrush situation.
November 29, 2010 ENT
Martha and I went to the ENT today for a follow-up on my issues with swallowing. I tried to swallow some plain water just before we went and the water came out both nostrils. The doctors says that the thrush looks much better but cannot tell if the throat is blocked or not. If the ability to swallow does not return in the next couple of days I will be having out-patient surgery on 12/2 to see exactly what is going on and remove any blockage. They may also stretch the esophagus if they find that it is constricted.
Pre-op is tomorrow.
Pre-op is tomorrow.
November 30, 2010 Pre-Op
Martha and I went to 335 Brighton Ave for my pre-op checkout this morning. They determined that I had a limited range of motion for opening my mouth and that would be an issue in the OR where I was initially scheduled. The surgery has now been moved to MMC Bramhall and also moved up one day to 12/1 at 1 PM.
The radiation oncologist does not think this issue is due to stricture in the throat but rather is an issue with the soft pallett. My soft pallett does not move when I say "ahhh" like a normal persons.
The radiation oncologist does not think this issue is due to stricture in the throat but rather is an issue with the soft pallett. My soft pallett does not move when I say "ahhh" like a normal persons.
December 1 and 2, 2010 Hospital and Surgery
I spent the day in the hospital having surgery to solve my swalowing problem. My throat was dilated to allow space for liquids/foods to be able to pass. I had to spend the night in the hospital to ensure that the dilation did not cause any perforations.
I spent the night in the hospital last night while being watched for complications from the dilation. I went almost 24 hours without eating. The finally let me have a couple of cans of Jevity at 8:30 pm. Martha brought them in from home and helped me to set everything up.
This morning the ENT came by to see if I was able to take a sip of juice without it coming out thru my nose. Unfortunately I was not able. On the very first sip the jiuice ran out both nostrils. He is hoping that the condition will improve as the swelling from the operation goes down. But thinks that potentially serveral more procedures will be required. He said that the inside of the throat was covered with scarring from the radiation. The ENT signed my release and I was home by 9 am today.
The other possibility is that I just eat as well as I can and wait to heal. It is just such a long drawn out wait. Today is 98 days since I started my first chemo treatment.
I spent the night in the hospital last night while being watched for complications from the dilation. I went almost 24 hours without eating. The finally let me have a couple of cans of Jevity at 8:30 pm. Martha brought them in from home and helped me to set everything up.
This morning the ENT came by to see if I was able to take a sip of juice without it coming out thru my nose. Unfortunately I was not able. On the very first sip the jiuice ran out both nostrils. He is hoping that the condition will improve as the swelling from the operation goes down. But thinks that potentially serveral more procedures will be required. He said that the inside of the throat was covered with scarring from the radiation. The ENT signed my release and I was home by 9 am today.
The other possibility is that I just eat as well as I can and wait to heal. It is just such a long drawn out wait. Today is 98 days since I started my first chemo treatment.
December 3, 2010 Have to gain weight
I still cannot swallow this morning. I have decided to stop waiting until I can eat solid food and concentrate on gaining weight now. For most of this ordeal I have been lucky to get 4 cans of Jevity/Osmolite down per day. I am now going to attempt to get the equivalent of 6 to 8 cans per day. That should give my body plenty of caleries to burn in order to heal itself.
Saturday, December 4, 2010 6 cans
Yesterday I started to dedicate myself to gaining weight, it was the first time that I consumed 6 full cans.
Today I finished my 6th can at 6:20 pm I may actually be able to finish 7 today.
I still cannot swallow.
Today I finished my 6th can at 6:20 pm I may actually be able to finish 7 today.
I still cannot swallow.
Sunday, December 5, 2010 Fentanyl
The increased caloric intake has made me sleepier than usual. I have been taking numerous naps over the course of the last few days.
We reduced the Fentanyl patch to 50 mcg/hr today. I would like to reduce it to the point that I no longer need to use a laxative daily. This is the only opiate that I am currently taking.
We reduced the Fentanyl patch to 50 mcg/hr today. I would like to reduce it to the point that I no longer need to use a laxative daily. This is the only opiate that I am currently taking.
Monday, December 6, 2010 Mucus
The mucus feels like it is lesseing in total volume but becoming thicker and adhering strongly directly around where my soft pallett closes off. It seems no amount of hacking will make it move.
The mucus set off my gag reflex this evening and I puked.
The mucus set off my gag reflex this evening and I puked.
Tuesday, December 7, 2010 Mucus
Mucus remains localized around my soft pallett. At least it feels like it is. Mucus is very thick and hard to get to move enough to spit it out.
Wednesday, December 8, 2010 Voice
Martha says that by voice sounds less nasaly this morning. I had actually thought the same when testing my voice earlier.
Thursday, December 9, 2010 ENT, CT Scan
Appointment with the ENT at 8:30 am this morning. He is still talking about dilating the throat again in the future. I am pretty sure that I am just going to weight until I have completely healed and see where I am at that point before heading back to the operating room again.
I had another CT scan at 10 AM. This one will be used to see if any of the cancer remains.
I had another CT scan at 10 AM. This one will be used to see if any of the cancer remains.
Saturday, December 11, 2010 Weight down 28 pounds
As of today I have lost 28 pounds since the beginning of treatments 107 days ago.
I am consuming at least 2130 calories per day of late but still have not gained any weight back. I think my body is using the extra calories to repair itself.
I still cannot swallow and when I attempt it the materials is forced through my nasal cavity and then out my nose. The nasal quality of my voice is beginning to diminish. I am hoping that the issues with swallowing will diminish simultaneously.
I see the Oncologist next week to get the results of last weeks CT scan. That should let us know if I am going to need another surgery or not.
I am consuming at least 2130 calories per day of late but still have not gained any weight back. I think my body is using the extra calories to repair itself.
I still cannot swallow and when I attempt it the materials is forced through my nasal cavity and then out my nose. The nasal quality of my voice is beginning to diminish. I am hoping that the issues with swallowing will diminish simultaneously.
I see the Oncologist next week to get the results of last weeks CT scan. That should let us know if I am going to need another surgery or not.
Monday, December 13, 2010 Oncologist
Martha and I will go see the oncologist at 3:30 PM this afternoon. Hopefully he will have the results of the latest CT scan.
The CT scan did not show anything conclusively. There is still some non-symatry in the throat. The left side still looks like it is swollen. We are going to give more time to heal and then revisit with another CT scan in early 2011. The oncologist wants us to monitor the lymph node on the left hand side and alert him immediately if we think we detect growth.
The CT scan did not show anything conclusively. There is still some non-symatry in the throat. The left side still looks like it is swollen. We are going to give more time to heal and then revisit with another CT scan in early 2011. The oncologist wants us to monitor the lymph node on the left hand side and alert him immediately if we think we detect growth.
Friday, December 17, 2010 Mucus
Mucus feels like it is still localized (or feels like it is). Overall recovery remains very slow. Martha and I are both getting quite tired of it.
I added V8 to the tube feedings today.
We cut then Fentanyl down to 25 mcg/hr today also.
Any attempts to swallow still result in the substance being forced up into my nasal cavity. Both the Oncologist and ENT think that just waiting is the best course of action to take at this time. I do see the ENT next week on 12/23 for another look to see how the throat is progressing.
I added V8 to the tube feedings today.
We cut then Fentanyl down to 25 mcg/hr today also.
Any attempts to swallow still result in the substance being forced up into my nasal cavity. Both the Oncologist and ENT think that just waiting is the best course of action to take at this time. I do see the ENT next week on 12/23 for another look to see how the throat is progressing.
Sunday, December 19, 2010 7 can day
First day that I had 6 cans plus goop basically a 7 can day.
Monday, December 20, 2010 Cutting down on meds
I tried to skip the lactulose this morning but so far I have only had a minor BM. I will take some tomorrow morning if there is no progress.
I am supposed to change the fentanyl patch today but have decided to just leave the one I currently have on. I am currently at 25mcg/hr and would like to get off pain-killers completely.
I am also starting to cutdown on sudefed and aleve.
I am supposed to change the fentanyl patch today but have decided to just leave the one I currently have on. I am currently at 25mcg/hr and would like to get off pain-killers completely.
I am also starting to cutdown on sudefed and aleve.
Wednesday, December 22, 2010 Headband
My headband that holds my mouth closed so it will not dry out is starting to slip off quite a bit at night. I guess it has finally streached out to the point that I need a new method. I will order something from the web today.
I ordered a "Premium Chin Strap" from Amazon today. It looks like it will be more secure than my current method. It should be here next week just before the new year.
I still cannot swallow liquids, etc.
I ordered a "Premium Chin Strap" from Amazon today. It looks like it will be more secure than my current method. It should be here next week just before the new year.
I still cannot swallow liquids, etc.
Friday, December 24, 2010 Barbie Boobies
My wife has taken to asking me to say "barbie boobies" at every opportunity. This is because I cannot make the "b" sound with my current swallowing/talking issue.
This morning when I got up and she asked me I was able to say it almost properly. I was also able to drink a tiny bit of water and not have it come out my nose. These are both very good signs. By the time noon had rolled around I was no longer able to speak properly or drink water but we are now making daily progress. I think that time alone is going to fix both issues, which is certainly better than surgery.
I am still down 20+ pounds even through I am consuming approx. 2500 calories per day. I do however feel pretty good.
This morning when I got up and she asked me I was able to say it almost properly. I was also able to drink a tiny bit of water and not have it come out my nose. These are both very good signs. By the time noon had rolled around I was no longer able to speak properly or drink water but we are now making daily progress. I think that time alone is going to fix both issues, which is certainly better than surgery.
I am still down 20+ pounds even through I am consuming approx. 2500 calories per day. I do however feel pretty good.
Saturday, December 25, 2010 Christmas
Christmas day. I got up at 5:30 am and turned on the lights on the tree and turned on Christmas music so all would be ready when others got up. At 6:30 Devan came down and told me that the music was keeping her awake and wanted me to turn it down so she could sleep another couple of hours. So I did and went back to bed for an hour or so. Times sure have changed from when she was little.
We had a great Christmas. Stockings at around 9 am, the tree at around 10 am. Melva showed up at noon and we did her part of the tree which we had saved till she got here.
I felt pretty good all day. Today was the least mucus that has come up on any day since the begining of the treatment.
We had a great Christmas. Stockings at around 9 am, the tree at around 10 am. Melva showed up at noon and we did her part of the tree which we had saved till she got here.
I felt pretty good all day. Today was the least mucus that has come up on any day since the begining of the treatment.
Thursday, December 30, 2010 8 can day
I believe this to me my first 8 can day. The last osmolite also had 2 tablespoons of olive oil in it.
2 jevity/osmolite 8 am
goop 9:30 am
2 jevity/osmolite 11 am
2 jevity/osmolite 6:15 pm
1 osmolite 10:30 pm
2 jevity/osmolite 8 am
goop 9:30 am
2 jevity/osmolite 11 am
2 jevity/osmolite 6:15 pm
1 osmolite 10:30 pm
Saturday, January 1, 2011 New Years Day
New Years day.
I have not taken lactulose for nearly a week now. I am having BM every morning just like in the old days. I guess the fentanyl dose is finally low enough that constipation will no longer be an issue. Lets hope.
I have not taken lactulose for nearly a week now. I am having BM every morning just like in the old days. I guess the fentanyl dose is finally low enough that constipation will no longer be an issue. Lets hope.
Friday, January 7, 2011 The Oncologist
Oncologist today 11:15.
The oncologist believes that the cancer is now gone.
It has now been 49 days since my ability to swallow disappeared. My voice became very nasally at that time also. The oncologist says that the longer this issue persists the less likely it is to resolve itself naturally. Since it has been 49 days already he is not optimistic. He is going to talk to the ENT surgeon today and make a recommendation to Martha and I next week (hopefully). This recommendation will likely be a trip to Mass to see some Ear, Nose and Throat surgeons that deal with non-standard complications like mine.
The next CT scan will me in 3 months.
The oncologist believes that the cancer is now gone.
It has now been 49 days since my ability to swallow disappeared. My voice became very nasally at that time also. The oncologist says that the longer this issue persists the less likely it is to resolve itself naturally. Since it has been 49 days already he is not optimistic. He is going to talk to the ENT surgeon today and make a recommendation to Martha and I next week (hopefully). This recommendation will likely be a trip to Mass to see some Ear, Nose and Throat surgeons that deal with non-standard complications like mine.
The next CT scan will me in 3 months.
Saturday, January 8, 2011 Restless
Each day for the last week or so sleep has been becoming more and more difficult due to uncontrollable arm and leg movement. I believe it to be similar to restless leg syndrome except it is arms and legs.
Sunday, January 9, 2011 No Medication
I have not taken ANY medications of any kind today. That is a first since long before the beginning of treatment.
Monday, January 10, 2011 Still need Ambien
Tried to sleep last night without taking an ambien but failed. I got up at midnight at took one via the tube. Even with the Ambien I slept fitfully and woke up at 5 am. It looks like it will be a mentally hazy day.
I called the oncologist today to see if he had contacted the ENT yet to discuss next steps. The nurse said that he had not. I am planning on calling every two days until they talk.
I called the oncologist today to see if he had contacted the ENT yet to discuss next steps. The nurse said that he had not. I am planning on calling every two days until they talk.
Wednesday, January 12, 2011 My First 9 can day
Today I consumed the equivalent of 9 cans of Jevity/Osmolite at 355 calories per can. 3195 calories.
Friday, January 14, 2011 Oncologist
I called the oncologist last Monday to see if he had talked to the ENT yet about next steps. The nurse told me that he had not yet but that she would call me with the results after they talked. Today is Friday and I have not yet received a call. I know that doctors are busy but I cannot speak properly or take food by mouth so waiting patiently is not going to happen. I will call the nurse again this morning.
The nurse calls me and told me that the oncologist had talked to the ENT and that he would call me as soon as he got out of the meeting that he is currently attending.
The oncologist called me back and he had talked to the ENT. We went back and forth for awhile and we finally decided I should go back to the ENT one final time and see if we think his plan forward is viable for us in our situation.
The nurse calls me and told me that the oncologist had talked to the ENT and that he would call me as soon as he got out of the meeting that he is currently attending.
The oncologist called me back and he had talked to the ENT. We went back and forth for awhile and we finally decided I should go back to the ENT one final time and see if we think his plan forward is viable for us in our situation.
Friday, January 28, 2011 Caught a bug
At around 9:30 am my throat seemed to partially fill up with mucus. 2 or 3 hours later my throat got sore and stayed sore for the remainder of the day.
Saturday, January 29, 2011 Sore throat
Sore throat remains. I also have a pretty persistent cough.
Sunday, January 30, 2011 Sore throat continues
Sore throat continues. I also do not feel very well. I am hoping this is just a cold. I already have an appointment with the ENT for Tuesday morning at 8 am. I also have a pretty persistance cough.
Monday, January 31, 2011 Sore Throat continues
Sore throat persists.My neck appears to be swollen this morning. I can barely see my adams apple. I have a pre-scheduled visit with the ENT tomorrow morning so I will probably just wait to see him to get an opinion on what is happening.
Tuesday, February 1, 2011 The ENT doctor
I see the ENT this morning and hopefully he will be able to diagnose my oral infection. We are also going to discuss next steps for my voice and swallowing issues.
The ENT thinks that I may have strep and took a culture. He will have the results in 2 days.
We made another appointment out 1 week to discuss next steps.
The ENT thinks that I may have strep and took a culture. He will have the results in 2 days.
We made another appointment out 1 week to discuss next steps.
Wednesday, February 2, 2011 I can't breath!
When I woke this morning and sat up on the edge of the bed to get dressed and suddenly I could not breath. Inhaling as hard as I could resulted in a wheezing sound as air slowly was pulled into my lungs. My wife wakes up saying Joe Joe what is it? I could not respond. After 30 or 40 seconds I was near to becoming panicked. I stood in the bathroom door with my head against the door jamb and tried to breath slowly. When I had a lungful of air I would hack it out as hard as I could hoping to release whatever the obstruction was. After around 1 and a half or 2 minutes the issue subsided and I could breath again. This by far the scariest event that has occurred during my treatment/recovery.
I called both the oncologist and the ENT to get some advice on how to proceed. Of course today being 2/2/2011 there is a huge snowstorm in progress in Maine and both offices were closed. The oncologist called back first but did not really have much to offer but did think it was a one time thing. The ENT called and after listening to my story thought that it sounded like my vocal cords had temporarily closed cutting of the air supply to my lungs. The ENT also thought is was most likely a one time occurrence but told me that if it happened again to head to the hospital.
The ENT thinks that the issue could be caused by acid reflux and recommended that I sleep with my head elevated. Of course the cause could also be the bug that I caught over the weekend and am still fighting. I spent the rest of the day with the feeling that I was only seconds away from a recurrence. I was not able to work. The bug that I caught also managed to completely block my nasal passages making breathe through my mouth which I normally avoid since I have very little saliva.
I called both the oncologist and the ENT to get some advice on how to proceed. Of course today being 2/2/2011 there is a huge snowstorm in progress in Maine and both offices were closed. The oncologist called back first but did not really have much to offer but did think it was a one time thing. The ENT called and after listening to my story thought that it sounded like my vocal cords had temporarily closed cutting of the air supply to my lungs. The ENT also thought is was most likely a one time occurrence but told me that if it happened again to head to the hospital.
The ENT thinks that the issue could be caused by acid reflux and recommended that I sleep with my head elevated. Of course the cause could also be the bug that I caught over the weekend and am still fighting. I spent the rest of the day with the feeling that I was only seconds away from a recurrence. I was not able to work. The bug that I caught also managed to completely block my nasal passages making breathe through my mouth which I normally avoid since I have very little saliva.
Thursday, February 3, 2011 No Strep
The ENT called me back today and told me that the strep culture came back negative (no strep). He also told me that he wanted me to continue with the antibiotics that he prescribed. He asked if I had experienced any more breathing issues. Luckily I had not. I do still have a sore throat although it is now localized to the right side only.
Friday, February 4, 2011 Sore Throat continues
Throat is still sore and the mucus is still flowing but I feel much better today. It appears that Peg has the same bug I have. She also still has a sore throat and has been sick for 8 days now.
Sunday, February 6, 2011 Sore Throat continues
Throat is still sore. It has now been 10 days
Tuesday, February 8, 2011 Last partial Ambien
Sore throat is now almost gone.
The night before last I used my last partial ambien so last night was my first night without ambien. I slept fine and for the first time in months I had dreams that I can actually remember.
The night before last I used my last partial ambien so last night was my first night without ambien. I slept fine and for the first time in months I had dreams that I can actually remember.
Thursday, February 10, 2011 Sore Throat almost gone
Sore throat is now almost gone. The mucus also seems to reducing a bit.
Saturday, February 12, 2011 Sore Throat gone, first foosball games in months
The sore throat appears to be gone now.
Wayne came over and played foos for a little over two hours today. I played better than I thought I would. The games were pretty even. The movements did cause the PEG tube stoma to leak profusely. As soon as Wayne left I had to change the dressing.
Wayne came over and played foos for a little over two hours today. I played better than I thought I would. The games were pretty even. The movements did cause the PEG tube stoma to leak profusely. As soon as Wayne left I had to change the dressing.
Sunday, February 13, 2011 over tired slept poorly, swallowed small sips of water
I think I got over tired yesterday playing foosball. I slept poorly and woke up at 4:30 and could not get back to sleep.
Today I was able to drink small sips of water without it coming out my nose. Let's hope the trend continues.
Today I was able to drink small sips of water without it coming out my nose. Let's hope the trend continues.
Wednesday, February 16, 2011 Foos at Jim's
I went to Jim's and played foos with Jim and Chuck for approx. 1 hour (I did not want to over do it). This is only the second time I have played in months and the first time I have left my house in order to do so.
Thursday, February 17, 2011 Oncologist
Saw the oncologist today and discussed our Boston trip to get a second surgical opnion. So March 3rd Martha and I will be heading to Boston. We will be going to Mass Eye and Ear which is a very busy office with many doctors that have seen my exact side effect. They also have specialiasts in reconstructive surgery.
Sunday, February 20, 2011 Coffee and tea
About 6 days ago I started to be able to swallow small/tiny amounts of water without the water coming out my nose. Yesterday I was able to drink about 1/4 cup of coffee with small sips without the coffee coming out my nose. Today I drank 1/4 cup of coffee and had about 1/2 cup of tea. My right ear was starting to pop pretty badly so I stopped drinking the tea. Still very encouraging signs.
Wednesday, February 23, 2011 Foos at Wayne's
I went to Wayne's tonight to play foos with Wayne, Jim and Chuck. I played a full two hours which was to much. My whole right side was sore by 9 PM when I stopped. I will be paying for this the next couple of days.
Saturday, February 26, 2011 Soup!!!
Today Martha made some chicken vegetable soup and since I was able to drink small amounts of water I figured I would give the broth a try. The broth tasted wonderful and I did not have much trouble swallowing it. At this point any swallowing attempts are still accompanied by quite a pit of coughing and the feeling that mucus is moving.
The broth tasted so good I tried a small bowl (1/2 cup) of soup with solids in it, carrots, sweet potatoes, squash, onions, chicken, broccoli and cauliflower. I was able to eat everything relatively easily. I then consumed an additional 2 small bowls. So today marks the first day I have been able to consume food by mouth since before Thanksgiving. I am a very, very happy camper.
November 21st was the last time I was able to take food by mouth, that was 97 days ago.
The broth tasted so good I tried a small bowl (1/2 cup) of soup with solids in it, carrots, sweet potatoes, squash, onions, chicken, broccoli and cauliflower. I was able to eat everything relatively easily. I then consumed an additional 2 small bowls. So today marks the first day I have been able to consume food by mouth since before Thanksgiving. I am a very, very happy camper.
November 21st was the last time I was able to take food by mouth, that was 97 days ago.
Sunday, February 27, 2011 Cream of wheat
I made a serving of cream of wheat for breakfast and added 4 teaspoons of sugar and 1/3 cup of heavy cream for extra calories. It tasted great and I was able to eat the entire serving which surprised me. There was still quite a bit of coughing and hacking that accompanied the meal but it was well worth it.
I also ate about 1/3 of a hamburger and a bowl of chicken vegetable soup. The hamburger was more than I could handle. I won't try that again for awhile. I very good day.
I also ate about 1/3 of a hamburger and a bowl of chicken vegetable soup. The hamburger was more than I could handle. I won't try that again for awhile. I very good day.
Monday, February 28, 2011 Caught a cold
Trying to take food by mouth daily now. At this point only watery soups are easy to comsume.
I caught a cold yesterday. Coughs, sneezing, runny nose.
I caught a cold yesterday. Coughs, sneezing, runny nose.
Tuesday, March 1, 2011 The cold is getting worse
The cold is getting worse. My nose is running like a faucet and I am coughing enough to make the peg tube leak badly.
Thursday, March 3, 2011 Dr. Deschler, Mass Eye and Ear Infirmary
Martha and I drove to Boston today to get a second surgical opinion at the Mass Eye and Ear Infirmary. We were in the Head and Neck wing. The waiting room had approx. 20 people including patients and family members. One woman was lacking a nose. The conversation in the room included at least one computer generated voice. Most of the rest including myself all had bottles of water with them (the patients). The place actually made me feel lucky I was in such good condition.
I was examined thoroughly by a resident and then again by Dr Deschler himself (which was unexpected he is the Director). The examination was much more thorough than those I received by the Ear, Nose and Throat surgeon in Maine.
No sign of cancer was found.
My soft palate has been both shortened and stiffened by the radiation. Both sides are affected but more so on the left side. In this state it is not possible for it to completely close. The doctor says that the soft palate should continue to heal and loosen up over the next 1.5 years. He does not think it will ever work as it once did but I will be able to live with it and eat near normally. He believes my voice will also continue to improve but that a slight nasal quality will always be present from now on.
He also discovered that one of my vocal cords is not moving as it should (again from the radiation) which also affects my voice. He says this will also improve with time.
Surgery is not recommended for these issues. Deschler says that time alone will get me just as much improvement as any of the possible surgical scenarios without the complications associated with operating on regions that have been heavily irradiated.
Deschler is one of the top guys in the country for Head and Neck and knows what he is talking about.
He told me to concentrate on foods that will either run off a plate or slide off a plate that is turned 45 degrees sideways. Anything that sticks to a plate or would tumble off the plate stay away from.
I am not really sure how I feel about the situation. It would have been nice if there was a “quick fix”.
Improvements had been occurring even before the trip down. I can now swallow both liquids and slippery foods like cream of wheat and scrambled eggs with lots of butter. That is a huge improvement over just a couple of weeks ago when I could not even swallow my own spit. My voice has improved to the point people seem understand me easily now and according to Deschler this will continue to improve.
So I just keep plugging forward.
I was examined thoroughly by a resident and then again by Dr Deschler himself (which was unexpected he is the Director). The examination was much more thorough than those I received by the Ear, Nose and Throat surgeon in Maine.
No sign of cancer was found.
My soft palate has been both shortened and stiffened by the radiation. Both sides are affected but more so on the left side. In this state it is not possible for it to completely close. The doctor says that the soft palate should continue to heal and loosen up over the next 1.5 years. He does not think it will ever work as it once did but I will be able to live with it and eat near normally. He believes my voice will also continue to improve but that a slight nasal quality will always be present from now on.
He also discovered that one of my vocal cords is not moving as it should (again from the radiation) which also affects my voice. He says this will also improve with time.
Surgery is not recommended for these issues. Deschler says that time alone will get me just as much improvement as any of the possible surgical scenarios without the complications associated with operating on regions that have been heavily irradiated.
Deschler is one of the top guys in the country for Head and Neck and knows what he is talking about.
He told me to concentrate on foods that will either run off a plate or slide off a plate that is turned 45 degrees sideways. Anything that sticks to a plate or would tumble off the plate stay away from.
I am not really sure how I feel about the situation. It would have been nice if there was a “quick fix”.
Improvements had been occurring even before the trip down. I can now swallow both liquids and slippery foods like cream of wheat and scrambled eggs with lots of butter. That is a huge improvement over just a couple of weeks ago when I could not even swallow my own spit. My voice has improved to the point people seem understand me easily now and according to Deschler this will continue to improve.
So I just keep plugging forward.
Friday, March 4, 2011 Ramen
I cooked up some ramen and ate approx 2 servings. This leads me to believe that I could handle spagetti as long as there was plenty of sauce that was not to thick.
Saturday, March 12, 2011 1 can of beige
I only ate 1 can today all other food was by mouth
Sunday, March 13, 2011 0 cans of beige (Osmolite)
0 cans of food today. All food was taken by mouth. I also made my goop (smoothie) today and was able to drink it.
Thursday, March 17, 2011 St Patrick's day PEG Tube removed!
St. Patrick's Day: At 9 am this morning my PEG tube was removed at Maine Med.
To remove the tube they had me lay on my back with my shirt removed. The doctor then put her hand on my stomach, looked at me and said "this is going to hurt" and pulled the tube straight out. It did hurt a bit but not bad. If I had known all I had to do was pull it out I would have done it myself.
They told me not to eat for 6 hours which would be 3PM. I ate a bowl of oatmeal at 3 and all was fine. At 4:30 PM I had a small high protein smoothie. At this point the stoma/fistula started leaking profusely. Luckily my wife has some ostomy supplies that I was able to utilize to stem the flow. A little research online reveals that the stoma/fistula takes approx 72 hours to heal. The doctor never mentioned that although it does make sense.
The tube was put in on August 18th 2010. I believe that makes a total of 219 annoying days with a PEG tube.
To remove the tube they had me lay on my back with my shirt removed. The doctor then put her hand on my stomach, looked at me and said "this is going to hurt" and pulled the tube straight out. It did hurt a bit but not bad. If I had known all I had to do was pull it out I would have done it myself.
They told me not to eat for 6 hours which would be 3PM. I ate a bowl of oatmeal at 3 and all was fine. At 4:30 PM I had a small high protein smoothie. At this point the stoma/fistula started leaking profusely. Luckily my wife has some ostomy supplies that I was able to utilize to stem the flow. A little research online reveals that the stoma/fistula takes approx 72 hours to heal. The doctor never mentioned that although it does make sense.
The tube was put in on August 18th 2010. I believe that makes a total of 219 annoying days with a PEG tube.
Friday, March 18, 2011 Leakage
I slept through the night ok with no additional leakage.
Stoma started leaking again around 10 am but was much slower than yesterday. When I changed the dressing the hole only appeared to be about 1/16 of an inch. I am pretty sure it will be completely closed soon.
Stoma started leaking again around 10 am but was much slower than yesterday. When I changed the dressing the hole only appeared to be about 1/16 of an inch. I am pretty sure it will be completely closed soon.
Saturday, March 19, 2011 Stoma still leaking
Stoma still leaking. Tomorrow at 9 am will be 72 hours.
Sunday, March 20, 2011 72 hours
The 72 hours passed and the stoma is still leaking. If it is still leaking in the morning I will give the doctor a call and see what action to take. Online it says limited outpatient surgery for unhealed PEG tube stomas.
Thursday, March 24, 2011 Losing weight
I appear to be losing weight rapidly since the removal of the PEG tube. I can't seem to eat enough to keep my weight up. The constant leakage from the PEG tube hole and the accompanying gas are the culprits. The gas makes it so I do not feel hungry.
I have lost 5 pounds in the last week, not good.
I have lost 5 pounds in the last week, not good.
Tuesday, March 29, 2011 CT Scan
9 AM CT scan today. They had me down for a "-C" which means no contrast. I tried to make them give me contrast anyway because I wanted the images to be a good as possible. This resulted in calls to Mercy and finally the boss radiologist refusing to give contrast without pre-medication. I guess I put them about 20 minutes behind to start off their day. So we went the no contrast route and I will get pre-medicated at the next CT scan in 3 months.
Thursday, March 31, 2011 Oncologist
Oncologist today at 10 AM to get the results of the CT scan. The scan showed no cancer but also showed that my neck and throat had not yet returned to "normal". Both the esophagus and trachea still are narrowed by swelling/scar tissue. Of course this may be my new normal since this will never completely heal to the point it is back the way it was a year and a half ago.
The doctor commented on my weight loss that has occurred since the PEG tube was removed. He recommended weight gain supplements to stop the loss and hopefully start to gain again. It looks like I am back down to around 157 lbs.
It has been 22 weeks 2 days since my last radiation treatment.
The doctor commented on my weight loss that has occurred since the PEG tube was removed. He recommended weight gain supplements to stop the loss and hopefully start to gain again. It looks like I am back down to around 157 lbs.
It has been 22 weeks 2 days since my last radiation treatment.
Sunday, April 3, 2011 PEG tube leak stopped
The hole left by the removal of the PEG tube finally stopped leaking at around noon today. I still put a dressing on when I went to bed just in case.
Monday, April 4, 2011 No Leakage today
No leakage today. It looks like the PEG tube hole has finally decided to close and stay closed.
Weight gain supplement (10 lbs. Muscle Juice) came today. 1 serving consists of 4x255 calorie scoops. I am going to start off with morning and afternoon snacks that consist of two scoops each mixed with water.
Weight gain supplement (10 lbs. Muscle Juice) came today. 1 serving consists of 4x255 calorie scoops. I am going to start off with morning and afternoon snacks that consist of two scoops each mixed with water.
Thursday, April 14, 2011 Situps
I did situps for the first time this morning. It appears that doing the situps caused the PEG tube wound to reopen. It is now leaking again although very slowly.
Friday, April 15, 2011 Still Leaking
PEG tube wound still leaking today.
Saturday, April 16, 2011 Super Glue
The PEG tube wound was still leaking this morning so I super glued the tiny opening closed. The PEG tube doctor said that they would "interfere" with the flow through the wound by either using medical glue or cauterizing the wound. I figure super glue will interfere with the flow also. The was no pain or stinging of any kind during the application.
Monday, April 18, 2011 Super glue was a bad idea
Super glue failed today and the leaking resumed. Unfortunately I now have a small chuck of super glue still stuck to the skin. Don't try this at home as they would say.
Wednesday, June 15, 2011 Weight regained
I am now back to my normal weight of 168 pounds unclothed. The supplements I started taking back in April did the trick. Some weeks I actually gained two pounds. Rather than spend money on "Muscle Juice" I just purchased the two main ingredients in bulk online, maltodextrin and whey protein. I got the fat for the smoothie from a combination of olive oil and Udo's oil. I also included any vitamins that I was taking in the smoothie.
The PEG tube hole has finally completely healed. It looks a little bit like a bullet hole only deeper.
The PEG tube hole has finally completely healed. It looks a little bit like a bullet hole only deeper.
Friday, June 17, 2011 6 month CT scan
I had my 6 month CT scan this morning. I had to take prednisone and benadryl prior to the injection of the "contrast" since I have had a reaction in the past. I will see the oncologist next week to get the results.
Thursday, June 23, 2011 Ear, nose and throat
I saw my ENT this morning to be scoped to see if there are any visible signs of cancer. He found no signs of cancer but there is still inflmmation and the tissues have not returned to their normal size.
Friday, June 24, 2011 CT scan results
I saw the oncologist today to get the results of last weeks CT scan. The scans were clear. Very good news. He also told me I should perhaps start cutting down on calaries since I now weight (173 unclothed) more than I did when I started treatment.
Saturday, July 9, 2011 Joined the USM Gym
This morning I joined the gym at USM and did a short easy workout. After a year (I was diagnosed on July 14th of last year) of fighting cancer, side effects and weight gain problems I am feeling really well and want to get into even better shape. I am probably over-compensating but I am going to do it anyway.