My "journey" started in late September 2009 with a persistent sore throat that did not turn into a cold as expected. At a visit to my GP he looked into my mouth and put me on a course of antibiotics,"Come back and see me in 10 days". 10 days later he saw no change so he referred me to an ENT specialist. The ENT told me that he saw a cancer on my right tonsil. He took a biopsy (Ouch!) and told me to come back later. Biopsy results did not look good so he sent me for scans to pinpoint the problem.
10/16/09 MRI scan
10/17/09 PET scan
The results all came back and he had me in for an interview. As he originally suspected, a 3cm (1 3/8") squamos cancer on my right tonsil also apparently attached to my jaw bone, my soft pallette and my tongue. The ENT, Dr. Broffman of Santa Rosa, is the sort of doctor one can have confidence in and he continued to tell me how would treat me (he probably told me while I was still numb from the information he had given me!). I went back to work that day to tell my boss I would need some time off and as soon as I started putting it into words, I guess the truth and the enormity of it all hit me like a ton of bricks!! Surgery was scheduled for 23rd November.
The first thing to do, I was told, is to and visit my dentist for a thorough check up. The reason for this is that after surgery and radiation, if any teeth have a problem and need to be pulled, there is a real danger of a runaway infection in the jaw which is potentially deadly (got my attention!). A thorough check up found that I needed 3 teeth pulled, 2 wisdom, one regular. I had them pulled under sedation (Versed, a brilliant drug that makes you forget everything!!). Also the dentist fitted me for a tooth shield which is needed for radiation. (More on that later).
Eventually the 23rd November came around and I am heading for surgery. Dr. Broffman had told me that he anticipated that it would be a 10 hour surgery. It turned out to be a 13 hour surgery. As you will see in the photo there was lot of work to do!! I am amazed that the doctor could stand there for 13 hours without a break for food or anything else and do his work. More than I could do. What follows is a fairly detailed description of the procedure (If you don't like this sort of stuff, skip the next paragraph).
The first incision is from under my chin to behind my right ear. Through this incision he can get to the cancer on my tonsil and he removes it. Also as the cancer is attached to my jaw bone he has to remove one tooth and cut the jaw bone through about half way between my chin and my ear. If you remember what a skull looks like, you will remember that the jaw bone is L shaped and goes up to just in front of the ear. Now he has cut the jaw bone through, the remaining L piece of the jaw is "floating" unattached and no longer performing any function so it is removed. I only have half a jaw on the right side. The surgeon cuts small pieces of my tongue away, freezes them and hands them to a lab technician for an instant analysis for cancer content. He continues to do that until he gets a cancer free result. He carries out the same procedure on my soft pallette (that is the soft part right at the back of the roof of your mouth). Now, hopefully, all the cancerous items have been removed but what is left is a mouth with large pieces missing that need reconstruction. The second incision is vertical from the first down to my collar bone. From that incision he removes a piece of muscle to create a "trench" or "trough" down my neck. Now it is getting bizarre! The next incision goes from end of the second incision, out to my shoulder, around in an arc, under my nipple, finishing up in the middle of my torso. now he can lift that whole piece of skin up like a flap to reveal the muscles of my chest (they don't make horror films like that anymore!). He selects a piece of muscle, disconnects one end low on my chest, pulls it out and folds it back up into the vertical trough cut he has made in my neck. He is going to use this piece of live tissue to reconstruct the area in my mouth where the jaw bone is missing. I am left with a depression down my chest where the muscle was removed and a lump at the top of my chest where the muscle has been doubled over. Another incision from under my chin to my lip allows him to hinge that side of my face up so that he can do the reconstruction. After that a lot of staples and stitching (something between 160 and 180 in total). I still am amazed that anyone can stand and do that for 13 hours!
This was followed by 9 days in intensive care where I was constantly attended to (why do they wake you up in the middle of the night just to check on you?). Dr. Broffman came round fairly frequently to check on me. Quite a bit of morphine and Vicodin, makes you sleep with very colorful, memorable dreams, but you do not feel so good when you are awake. A tracheometry tube was installed during the operation and the nurses use that to push a piece of plastic down in you lungs to tickle you into coughing up a load of obnoxious bad stuff that accumulates. I managed to contract Thrush inside my mouth for a while, not very pleasant.
30th November 2009. Final confirmed results back from the Pathology lab. During the operation Dr. Broffman removed 55 lymph nodes from my neck to get them checked. The Path lab states that out of the 55 lymph nodes, only 2 COULD be suspect. Great news!!
After 9 days I was really anxious to get out of laying in bed even though I was exercising around the halls (with help). The early hours of the morning I was due to leave I got into a real blue funk of a depression. I don't know if it was the side effects of morphine or just my state of mind, but I don't want to go there again. The day of my departure the doctor came round to remove the drains in my chest and back, and remove the trach tube.
Through all of this I had daily visits and support from my wife and (adult) children. This support has become increasingly important to me. Message to all: this is a long and sometimes hard road and support of family and friends is critical. This is not something that you can face alone, without their support I would have given up altogether and I do not want to think what that would have done for me. You are not being "tough" trying to do this alone, that attitude will cripple you. Read on; it will be obvious.
2nd December 2009
Home again, hurrah! Pretty weak and wobbly (that is what you get for laying around in a hospital bed for 9 days!). Slow movements, my son insisting that I use a walker wherever I go in the house. Because of potential fluid in my lungs I have been advised not sleep in a regular bed so I am sleeping upright in my favorite leather chair, (so comfortable I used to nap in it anyway).
4th December 2009. Visit to Dr. Broffman to remove the feeding tube from my nose. Unfortunately they forgot that I could not take food orally i.e. I have NO food calories coming into my body! Visiting nurses figure this out but due to slow moving permission from my insurance and waiting for an appointment with another doctor, it is 7 days before I get a tube attached directly into my stomach. An interesting experience being without food. I did not feel particularly hungry but I was getting weaker and weaker and starting to feel quite "spaced out". It is a slippery slope to starvation but I did not feel bad about it all. Dangerous!!
7th December 2009. Dr Broffman removes most of the stitches and staples from me. I don't know how many, but more than 150 and less than 200 (!)
11th December 2009. Feeding tube installed into my stomach. More of that lovely Versed drug again!!
This is me after having all the staples removed. The 3 week old beard means that you cannot see the work at my tonsil. The long scar around my chest is where they pulled a piece of muscle from my chest and the bump near my collar bone is where the muscle has been doubled back up into my neck for throat re-construction. Pretty amazing stuff really!
Now everyone leaves me alone to heal as much as possible before the next step, Chemo and Radiation. Frankly I feel so good after healing from the surgery I seriously question whether I need to go through Chemo and Radiation. As you will see later, I am still questioning that decision.
14th January 2010. First chemo treatment. Scheduled once per week for 6 weeks.
Important note here. At an earlier consultation the oncologist told me that there are 2 chemo drugs available, Cisplatin and Erbitux. Cisplatin is the traditional one that has the reputation of making you sick, Erbitux is relatively new (10 years). He decided that as this is my throat, lots of throwing up would not be a good idea, so we went for the Erbitux. I later saw people who were on Cisplatin, it is really awful!! Erbitux is a good choice. Having said that, I am now beginning to find out that all drugs have side effects. My first dose of Erbitux brought me out in a serious sweat and I thought I was going to pass out. So they stopped it immediately and gave me some Cortisone to take before the next try. The next try at Erbitux is successful but the side effect of the Cortisone is 36 hours of hiccups! So I have to take another drug to counter the hiccups. See how it goes?
21st January 2010. My first dose of radiation. Previously I had a special custom made mask made. This is a mesh like substance that they put over your face and it sets fairly hard. When you lay on the radiation table they put the mask on to your face and strap it to the table. This ensures that you are always in the same position on the table and that you do not move during the radiation. Although it is mesh and you can see through it, it is very close fitting and a little claustrophobic. Also I have to wear the tooth shield that the dentist made up for me. I believe this is to stop the radiation being defected by tooth filling material. Radiation takes about 15-20 minutes and the radiation "head" revolves around the table so you are bombarded from every direction. Like the chemo, the radiation is scheduled for 6 weeks but it is every day, Monday to Friday. After 30 times of being trapped in the mask with a mouth guard, you have had enough!
25th January 2010. I start speech therapy. This is to help my speech, which is not very good, but mainly understandable, but also to help with my swallowing, which is very difficult. My diet consists of canned food called Jevity which counts for 285 calories per can (I take this food through my stomach tube, 6 cans per day) and liquid foods like soups or something that goes down easily, (yoghurts, etc). The period when I lost my nose feeding tube and had not yet got my stomach tube cost me about 30 pounds of weight. The diet I am on right now will stop that loss getting any worse but will not add any weight.
There are many more side effects from chemo and radiation than I imagine. In a simple way radiation is a massive sunburn but you get burned on the inside as well as the outside. One of the side effects from the chemo is that the lower half of my face breaks out in zits and blisters. Apparently the more you get the happier the nurses are because it proves that it is working properly! Now you add a king size sunburn and I am not fit to be seen in public. It is toward the end of the 6 week period that the side effects become more apparent. Sore throat (hardly a surprise), sore mouth (sun burn inside), more Thrush mouth infection, fairly tired a lot of time. The people at the cancer center where they do the chemo/radiation are all really nice and sympathetic, they know what it is like, they see it every day. Finally I am done with chemo/radiation. I need some time to recuperate.
At home I get this awful, ropey phlegm a lot of the time. You can almost throw up just spitting out of your mouth. Lots of gargling with water + salt + baking soda is about all you can do. Not much body strength and not much stamina either. Generally tired and tired of dealing with it. Can't let it get me down, cheer up!! Regular check ups with the ENT, the radiation doctor and the oncologist, this will go on for at least one year. After a while I am thinking of going back to work, something to get my brain moving, maybe the rest of my body will catch up.
A few conversations with the folks at work. Everyone tells me to take it easy, I am not ready for it yet.
3/22/10 First day back to work. It has been 4 months since my surgery. Guess what? Everyone else is right, work is really tiring. For the first 2 or 3 weeks I do 4-6 hours per day, come home and take a nap before dinner. The people at work are very considerate. I am beginning to think everyone else knows how serious this has been except.........little old me!
How is my body? Approximately half my face from the point of my chin back to behind my ear and from my right cheek bone down to the base of my neck is numb. My shoulder where the incision was is numb. Half the inside of my mouth and half my tongue is numb. They told me that the radiation would kill the saliva gland on the right side and would probably damage the saliva gland on the left. There are also small glands at the front of the mouth but they should be OK. I have read notes from people who lose all their saliva. That seems really bad. Saliva protects the teeth and aids digestion etc. it would be terrible to be without it. However I do still have saliva and sometimes the front glands overcompensate and I get a "wet" mouth at the front and dry at the back. Also I read about people who lose their taste. My taste is OK, no problems with that. I get some pain in (what is left of) my jaw and the side of my face, particularly when I open my mouth. The masseter muscle is still there and does try to work but it is no longer attached to my jaw (because it is not there) so it gives me quite a bit of pain sometimes.
August 2010. Here we are, up to date. I am checked by my 3 doctors (radiation, oncologist, ENT) fairly regularly. I go to speech once per week. My speech is continuing to improve but it is nowhere near where it should be. Scarring from the surgery is fading away. My neck is still fairly tight when I tip my head up. My strength is not what it was but it is OK and my stamina is almost normal. I am still taking canned food through my stomach tube but now I have a new plan; instead of pumping it into my stomach tube with a syringe regularly during the day, I now put 5 cans in one bag attached to a metering pump which is connected to my tube during the night. I get 1800 caloies while I am sleeping. I do get hungry during the day so I take a small lunch and I eat a dinner in the evening.
This is my biggest problem - eating. I do not think I have made any progress since January. I would wither away if it were not for the canned food. This is not where I want to be 10 months after my surgery. I can taste my food but it takes a long time to eat it and it is difficult. I can chew almost anything (always on the same side of my mouth because I cannot control food on the right side), and I am aware of the food in my mouth once it is chewed but I cannot make it swallow without a lot of effort, normally about 5 attempts to swallow. It frequently gets tiring to eat dinner and it also gets quite depressing when I think how little progress I have made. Simple cereal for breakfast makes me cough and splutter and it is sometimes more than I can face first thing in the morning. The speech therapist has suggested a prosthetic device to imitate the part of my soft pallette that is missing. This is partly to improve my speech because I cannot prevent air leaking up into my nasal area but it may help with food processing. Apparently it clamps on to the teeth so is removable. I mentioned it to Dr Broffman and he will look for a specialist dentist that could do the work.
September 2010. Had a consultation with a prosthedontist. Due to a few problems with my teeth it was his opinion that it would be fairly difficult for me to get used to a prosthetic device for only a little gain to my soft palette. I took his advice and I will live with what I have.
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