Mucositis

"Mucositis".  Who would have ever thought that it would be something to talk about?  Understandably, for you, I hope it never is.  But, for cancer patients, it is something very real.  To quote the Oral Cancer Foundation:

"Mucositis occurs when cancer treatments break down the rapidly divided epithelial cells lining the gastro-intestinal tract, leaving the mucosal tissue open to ulceration and infection.  Mucosal tissue, also known as mucosa or the mucous membrane, lines all body passages that communicate with the air, such as the respiratory and alimentary tracts, and have cells and associated glands that secrete mucus. The part of this lining that covers the mouth, called the oral mucosa, is one of the most sensitive parts of the body and is particularly vulnerable to chemotherapy and radiation. The oral cavity is the most common location for mucositis.

Oral mucositis is probably the most common, debilitating complication of cancer treatments, particularly chemotherapy and radiation. It can lead to several problems, including pain, nutritional problems as a result of inability to eat, and increased risk of infection due to open sores in the mucosa".

I've said several times in my blog that all I want is the truth.  "Shoot straight with me, don't sugar coat it."  

I understand that I am not like most patients here.  Most don't want to talk about it.  They choose to rest in the peace of knowing that the doctors have it under control, and they will be OK in the end.  I understand their feelings - cancer is a very scary thing.  Sometimes, scary things are best to be avoided.  Like a grizzly bear.  Let them go away - don't confront them.  For those patients, that might be the best approach.

My problem is not picking up on the subtle innuendos that are all so important.  "You will have a sore throat, most likely, but we have treatments to help with that."  

I wish they would have come right out and said, "Mucositis is the most common side effect to radiation therapy.  You will have painful sores in your mouth that will keep you from wanting to eat.  If you keep on top of it, we can minimize the pain."

For some patients, that would be a very scary thing to hear.  Maybe scary enough to make them want to forego therapy altogether.  

The doctors and nurses here at Northwestern see hundreds of patients.  I'm sure from experience, they have the introduction speech dialed in to be just right for every patient to hear.  If anyone ever reads this blog, and unfortunately ends up with cancer, all I can say is that if you are a "need to know" kind of person like me, ask questions.

I heard every word they said in the intro speech.  I just didn't pick up on how important it would be.

"You will have a burn in the area of treatment, make sure that you put lotion on it." "There will be some hair loss in the area of treatment."  "You will have a sore throat, but we can minimize the pain, if you keep on top of it."   

I should have asked how bad the burn would be, and how bad of a sore throat we are talking about.  Instead, I thought to myself, "Sun burn, sore throat?  This is easy stuff.  I'm not going to worry about it."

I've ruined two pillow cases, from blood stains, from the burns on the side of my face.  Every time I turn my head, the skin pulls and starts bleeding.  I'm probably going to have to pay for them.  

My point is that I didn't ask the right questions.  

I am hoping that, in this last week, I can impart some of the wisdom that I have learned onto someone that is just starting out.  Maybe help them be more aware of what is to come, and help them stay on top of it, to minimize their pain.

My message would be to take seriously what they say is ahead of you.  I blew it off, like most guys would.  Macho Joe does not do well in radiation therapy.  There will be pain and discomfort, and being prepared is the best medicine.  It doesn't make you a weaker man, just a better prepared man.  "Be prepared" is the Boy Scout motto.

I have five treatments to go, starting Tuesday.  The last will be Saturday, May 1st.  I can't wait for this to be behind me.