Hair and Shaving
These pictures were taken December 17th 2010. At this time I had not shaved or cut my hair since September 21, 2010. In other words 86 days. With the exception of my mustache the radiation caused pretty much all hair to fall out from my ears down to my shoulders. The radiation oncologist says that some of this hair may NEVER return and that only time will tell.
Do NOT shave areas that are undergoing radiation therapy! Your skin is being damaged by the radiation and shaving can cause the start of visible damage like that visible on my radiation damage page.
I can see hair starting to grow again on my chin but there is no sign of any hair growth and my neck. The back of my neck which you can see above feels like it has some very light beginning stubble but it is still to small to be seen.
Pain
Talking to the oncologists after my throat cancer diagnosis back on July 14 1020 scared the living shit out of both myself and my wife. In many cases throat cancer is curable but the treatment it self was described by the medical team as "horrible". The treatment in my case was 7 chemo treatments (described here) with simultaneous daily radiation therapy (described here) with 35 total treatments. The pain was indeed pretty bad but was controllable (enough) with medication. At the end of the radiation treatments when the pain was at its height I had a Fentanyl patch that delivered 100 mcg/hr. I was also taking 15-20ml of morphine sulfate solution every 3 hours (approx.). With this level of medication I was able to swallow liquids in tiny quantities right through the treatment. I could not however eat any solid foods. At this writing (12/17) I am down to 25mcg/hr fentanyl and 1 Aleve 3 times per day. These fentanyl and morphine are opiates which result in constipation. I have now been constipated nearly continuously since September 22 (92 days at this writing). I take 30 ml of lactulose daily to combat the constipation.
Mucositis
For me this is worse than the pain. The constant spitting and hacking up mucus. The feeling that your airways are blocked or could be any second by ultra thick mucus overwhelms me. It is difficult to think of anything else under these circumstances. The duration of the mucositis is the other issue. It seems never ending. My last radiation treatment was 70 days ago and still it persists.
PEG Tube (Percutaneous endoscopic gastrostomy)
If you are going to have chemo and radiation to your neck simultaneously the odds are good you are going to need a PEG tube. When mine was put in I experienced pretty severe gas for perhaps 4 days and then just gas for maybe 3 weeks. I am glad that I had my tube put in very early in the process. If I had waited until I had started chemo/radiation I would have been in a bad way. By putting it in early my gas issues had disappeared by the time treatment started.
Saliva or I should say no saliva
The treatment causes the saliva glands to produce dramatically less saliva than the norm. This affects your ability to taste but it also causes dry mouth which in turn causes dental problems and significant issues with sleeping. Saliva helps to begin digesting food and keeps your mouth at the correct PH. Without saliva your mouth is very open to invasion by bacteria and fungus. This makes oral card paramount and time consuming. Careful brushing with soft bristles and daily flossing is required. Rinsing outmyour mouth with a salt and baking soda rinse at least 6 times per day to stabilize the mouths PH is required. I also have fluoride trays that I have to wear for 30 minutes daily to help protect my teeth and gums.
No saliva also means dry mouth. It is difficult to describe what a very dry mouth feels like but I can tell you it is something to be avoided if at all possible. During the day you can use mouth rinses and saliva substitutes. My biggest issue comes ate night when trying to sleep. I have to use one contraption or another to keep my mouth from opening. If my mouth opens for even 15 minutes my mouth will completely dry out and wake me up in an unpleasant fashion. Then I get up rinse my mouth out with water, gargle with a special mouthwash for dry mouth prevention. Then secure my mouth in a closed position again and back to bed. It really seems like it was another life when I last slept through the entire night.
One thing that is sure to happen in the future that I am dreading is a simple cold. How will I get through the night and manage to get any sleep if my nose is stuffed up and I can't breath through my mouth? I will cross that bridge eventually.
No saliva also means dry mouth. It is difficult to describe what a very dry mouth feels like but I can tell you it is something to be avoided if at all possible. During the day you can use mouth rinses and saliva substitutes. My biggest issue comes ate night when trying to sleep. I have to use one contraption or another to keep my mouth from opening. If my mouth opens for even 15 minutes my mouth will completely dry out and wake me up in an unpleasant fashion. Then I get up rinse my mouth out with water, gargle with a special mouthwash for dry mouth prevention. Then secure my mouth in a closed position again and back to bed. It really seems like it was another life when I last slept through the entire night.
One thing that is sure to happen in the future that I am dreading is a simple cold. How will I get through the night and manage to get any sleep if my nose is stuffed up and I can't breath through my mouth? I will cross that bridge eventually.